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Autoimmune disease

Might I have ankylosing spondylitis?

29 replies

Athyrium · 02/10/2020 17:01

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 Sad 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?

OP posts:

IWishTheBishopWell · 17/11/2020 21:02

There's a private Rheumy near me who charges £175, might be worth looking a bit further afield?

Have you tried physio? I ask because I was able to get to my physio to support a rheumatology referral from my GP. My local physio can also refer for ultrasounds and xrays so if the physio service in your area is similar they may be prepared to do a scan?

Also, have you tried a different GP at your surgery? They might be more amenable to referring you?


Stoufer · 24/11/2020 15:25

I have had Ankylosing Spondylitis for about 27 years (was diagnosed in very early 20s), and I find that if I spend the evening sitting on a sofa (eg watching TV) then I will be very stiff overnight/early hours of the morning, but if I limit evening sofa-sitting, and do some bending/stretching in the evening (I find that loading/unloading dishwasher and putting laundry out really helps in this regard, I don't actually do stretching 'exercises'!) then I don't really get the morning stiffness. I also have a homedics massage chair (it has heat and vibration) - and I find that really helpful (it is permanently next to the bed, so I can use it last thing at night). I also use Celebrex for a week or two a couple of times a year. Good luck with it all - hope you get a diagnosis and treatment soon...


Athyrium · 24/11/2020 16:43

@Stoufer I must admit I do notice that sitting doesn't suit me any more, so I suspect you are right about sedentary evening = night time/next day issues. I do like flopping on the sofa after a busy day, but will have to rethink that then.

I did actually see a rheumy consultant yesterday and he said I definitely meet the criteria for further investigation along AS lines, so he is going to refer me for an MRI and has prescribed something that I can't recall, basically a NSAID that he says it easy on the getting somewhere at last!

OP posts:

3luckystars · 28/02/2022 12:08

I know this is an old thread but I’m just wondering if the op is still around and did you ever find out what was causing your back pain?

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