Might I have ankylosing spondylitis?

[Athyrium]

I've had severe nocturnal back pain the last 2 months, wakes me up after a few hours sleep and I have to get up and move around for an hour or so before it will settle... last night I had to get up at half 1, back to bed at half 2, it woke me again at half 5 The sleep deprivation is killing me. I've seen 3 GPs in that 2 months..tried naproxen, codeine, amitryptyline, yoga....nothing helps at all. I am 52 so GP told me Im too old for AS. Yet I have a long history of various aches and pains, what if I've just never been diagnosed? GP has concluded 'It's just one of those things.' I don't know what to do...Im getting close to desperate. Can anyone advise?

Have you been offered any blood tests? They can test for inflammatory markers and might help with a diagnosis, which in turn can make treatment more targeted.

My nocturnal back ache has improved enormously since I started taking turmeric, a natural anti-inflammatory, but if naproxen hasn't helped you then I doubt that turmeric would. Are you overweight? If so, losing weight can help reduce strain on the back. Daily walks can also be beneficial.

You could also ask your GP to refer you to a physio; they can be very good at diagnosing the root cause of back pain and suggesting exercises to help. Osteopaths can be helpful too.

I hope you can get to the bottom of it. Broken sleep is miserable.

No blood tests offered.Thats an idea tho. I think I'll see if I can get a private test for inflammation. I am a bit over weight as it happens, currently low carbing to lose some of it so be great if that helps. Physio has suggested yoga which I have been doing religiously. It has helped with my overall stiffness but no impact on this weird night time pain.

Just a thought, how old is your mattress? Could be that it is not doing its job .

I know someone with this and it's pilates she needs not yoga, strong core, waist, glutes.

Would seeing a rheumatologist be advisable?

I suffer from back pain and Pilates has helped enormously. I was on holiday recently and as I didn't do Pilates I started to suffer back pain again.

However the thing that made the biggest difference was getting a new mattress. I hadn't realised how much my fairly old mattress was affecting my quality of sleep. I'm also in my 50s.

My mattress is quite new - a decent one too, I splashed out after my divorce!

Doadear Would love to see a rheumatologist but would need a referral and GP not being helpful. I think they have me down as a hypochondriac and dont take me seriously because I've had so many issues with undiagnosed pain and fatigue over the years.

Has anyone in your immediate family or further got psoriasis or any type of inflammatory arthritis? If so then that will give you some weight to requesting a referral to rheumatology.

And at 52 you are most definitely not too old to develop something like this. It may be something like psoriatic arthritis which can affect the sacroiliac joint which can give horrendous back pain.

Fibromyalgia? The pain often wakes me at night

My ver sportu and active brother was diagnosed with AS with peripheral joint involvement at the age of 32, after three years of pain and frequently incapacity. He had to go to work on the bus for a few months and stand while at work as he could only stand or lie down for that period. He couldn't hold pens or mugs or cutlery for some of the time either.

After diagnosis, and discovering that exercise was encouraged rather than being told to rest, he has managed well, although it takes him quite a while to get going in the morning, he has periods when he is worse, and we are all sure he is frequently in more pain than he lets on.

However, at the age of 49, his diagnosis was changed. No longer AS, but rheumatoid arthritis. He is now on methotrexate, has had a hip replacement, and carrying on.

So I would try to get medics to explore all types of autoimmune and arthritis inflammatory type diseases.

I was diagnosed at 54 so not too late at all. If GP is unhelpful, could you pay for a private Rheumatology consultation? Or use a GP app such as Babylon?

PS the blood tests will only show up inflammation if you are mid flare up. Mine all came back negative, but I was diagnosed from the MRI

BoulangerieBabs my niece has psoriatic arthritis, not sure that counts as close family tho?

dementedma Funnily enough I was diagnosed with fibromyalgia 18 months ago due to chronic pain...I started amitryptyline a while ago which has been transformational - totally knocked the pain on the head, which I was told suggested it wasnt fibro. Also this pain is different - my 'normal' aches and pains were constant night and day - this is very specifically after a few hours sleep and amitryptyline doenst help at all.

I have AS - do you have any other symptoms or just back ache?

My sister had struggled for years with no diagnosis. Couldn’t get a rheumatologist referral so paid for a private mri. I think it cost about £200 and she was then able to use that with the GP to get a referral as she definitely has AS.

Friendsoftheearth At the moment its the nocturnal back pain that is killing me. Im weary all the time, even before the sleep problems due to this current issue; I suffer from low energy a lot. I've been mulling things over today and can honestly say I have had issues with pain most of my life..comes and goes...but I often feel like something is wrong that I cant put my finger on. I would bore you if I started on about the parts of my body Ive had problems with over the years...

@Athyrium

BoulangerieBabs my niece has psoriatic arthritis, not sure that counts as close family tho?

dementedma Funnily enough I was diagnosed with fibromyalgia 18 months ago due to chronic pain...I started amitryptyline a while ago which has been transformational - totally knocked the pain on the head, which I was told suggested it wasnt fibro. Also this pain is different - my 'normal' aches and pains were constant night and day - this is very specifically after a few hours sleep and amitryptyline doenst help at all.

Yep your niece counts if she is blood related to you.

Are you on HRT ? I found my back pain really improved once I had some oestrogen.

I have Ank Spond and the first time I was sent to a back clinic in my 20's the physio was the one who suggested that's what was wrong.
Unfortunately about 30% of people including me don't have the blood markers and the consultant thought the damage showing on the MRI was wear and tear.
Five years later I had the symptoms you describe with lower back/hip pain keeping me awake at night. I went through months of hell and every type of painkiller/muscle relaxant available before another physio and MRI got my Ank Spond diagnosis. The good news is that I was started on a biologic for it straight away and regained a lot of movement and my sleep.
You need an MRI and your age at diagnosis is irrelevant, it's a progressive disease some people will be diagnosed as teenagers and some in their 50s. That's the nature of progressive diseases!
If your GP won't refer you and you can afford it I'd get a private MRI to get diagnosis.

You need an MRI anyway, as you could have arthritis in your spine and that does not mean it is AS but you will need some diagnosis by a specialist. I have been under a RC for many years, there is very much you can do to ward of the worst of the disease, exercise, sleep, relaxant, muscles massages, stretching, pacing your daily life and keeping yourself as mobile as possible. Biologics are available and work very well. I needed two hip replacements before the age of 40 so I would encourage you to get a referral asap and find a consultant that specialises in AS. Good luck.

Also with an MRI it's worth getting the copy of your scan on a disc as you can take it to future consultants

Psoriatic arthritis can affect the spine and cause back pain. I am being investigated for psoriatic arthritis as I have some swollen joints and what my GP thinks is psoriatic nail disease. Sometimes the arthritis predates the skin/nail disease. So given the family history they should be seriously considering investigating you, even if you don't have psoriasis.

How are your nails OP? Any detachment or pitting? Nail involvement is common with PsA.

My family history of arthritis is usually considered by my GPs - maternal grandmother with RA, paternal uncle with both RA and ankylosing spondylitis. So make sure they know about your niece.

I would push to see a Rheumatologist. It could also be osteoarthritis in the spine - both my parents have that and it started in their 50s. If not some physiotherapists will organise xrays - in my area a back scan goes to physio on GP recommendation but physio can do it without a GP suggesting one.

My 81 year old grandmother was diagnosed with Rheumatoid Arthritis at 79 two years ago. So it's definitely not impossible to develop an autoimmune disease outside the typical age of onset (I believe for RA it's 20-40 so my grandmother was almost 40 years out...)

@Athyrium
Exactly what @M0rT said - The Ank Spond Facebk group was discussing this age issue this week and it is SO wrong on the basis it is a degenerative disease 🤦🏻‍♀️

It took the professionals 16 years to diagnose my AS.
24 when symptoms started, confirmed diagnosis at 40 due to the cost to the NHS.

You need a blood test for the HLAB27 gene as that’s a strong indicator. A good GP with a great listening ear can organise this. Keep a diary of pain, meds taken and the relief and how long for, any exercise - even basic eg walking - for how long as this will help a rheumatology team at your first consultation.

Your OP said your GP told you it was ‘one of those things’. To show you how blind to this disease GP’s are, see the attached picture. You need to find a GP who is aware of this condition.

nass.co.uk/

m.facebook.com/NationalAxialSpondyloarthritisSociety/

A good link from NASS:

www.healthawareness.co.uk/bones-and-joints/why-speed-is-of-the-essence-for-inflammatory-arthritis-diagnosis/?utm_source=OrganicMP-distro&utm_medium=Facebook#

@Athyrium
FYI only...x

A month later and not much has changed, I'm still in a lot of pain. Im increasingly having to pay for answers. I started off paying over £100 for the HLA b27 blood test which came back positive which spurred me on to persist with GP. GP response was to send me for xrays despite it being relatively well known (or not!) that x rays dont normally show AS. They were of course clear. I have enquired today about seeing a private rheumatologist. My local one is highly regarded so thats good. He is only doing phone calls because of covid. And apparently he charges £350 for an initial consultation I'm so fed up with all this. I suppose Im going to have to pay up