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Recently diagnosed with AS

(10 Posts)
Zann85 Sat 25-Jun-16 19:21:38

I've recently been diagnosed with ankylosing spondylitis, I am 30, lone parent who works full time. I'm really struggling to come to terms with the fact I will never have a pain free night again and what the future will hold for me. Is there anyone else on here that has AS that can share their experience so far. Thanks in advance

Squaddielife Mon 27-Jun-16 15:42:54

Hi Zann
I have AS, was diagnosed over 20 years ago. I have been on anti-inflams ever since although I don't always take them (depending on pain levels).
I am fully active and over the years have found that exercise is what really helps me so I make sure I go to the gym at least 3 times a week.
There's not alot I can't do... I've discovered over the years what triggers episodes for me (bowling for example - just a no go) but other than that life is normal smile The pain is worse first thing in the morning - once I'm up and about it wears off so no long lie ins for me lol. Have you been prescribed anything? I found accupunture really helped me during my pregnancy (as I couldn't take the meds).

July85 Mon 27-Jun-16 16:10:39

Thanks for your reply and for your advice. I have been prescribed Sulfasalazine, I take 4 a day, I've been told it can take 4 months to start taking effect, I've only been taking it 5 weeks. I have just started yoga and I will be seeing a physio weekly for the next couple of months. The pain at night is unbearable just now I'm awake most the night from 1am as you know lying down the pain is worse. The fatigue that comes with it is horrible too, I'm constantly tired yet can't sleep and I feel anxious and worried most of the time. I'm hoping the yoga helps and the medication starts working soon!

MrSlant Mon 27-Jun-16 16:19:05

Is your wee day glow colours yet? grin

I know it seems terrifying and life shattering, it's very, very scary to have a diagnosis like this BUT it is also very good news in other respects. You have a diagnosis, a known name for your condition, there is a good reason for your pain and you will be taken very seriously and looked after. Right now is probably the worst pain you will ever be in. Once you've been on sulfasalazine for a while you will start to be eligible for the other drugs that can and WILL stop your condition worsening which is brilliant news. I would see if you can get a referral to pain clinic and get some decent pain control going on.

If you go on FB we have a 'spin off' back pain group mostly from people on here and there are other people with AS who are very knowledgable about the condition and kind and helpful. PM me if you are interested.

If you are taking anti-inflammatories look after your stomach, this is VITAL.

I can't chat right now but will be around later. DON"T PANIC this sounds crap but actually everything is going to be all right.

July85 Mon 27-Jun-16 16:33:01

Thank you I really really appreciate your help and advice! And it's good to know the pain I'm in now won't be like this forever, coz I was under the impression it was and that thought was so depressing! My doctor did talk about the pain clinic, I will ask him for a referral, I heard something about an injection in the spine to help with pain? I will inbox you now about the Facebook group xx

July85 Mon 27-Jun-16 16:43:32

And yes my wee is illuminous!

Mummytron Sun 03-Jul-16 22:11:43

I have AS and am really struggling at the moment. Had it four years and always considered myself lucky as its been fairly mild. But recently my top half of my spine is so achy named it's really getting me down. I'm on anti inflammatories. My spine cracks a lot now too.
Could I join the FB group too?

July85 Mon 04-Jul-16 18:19:15

Mummytrom if you want to chat about AS please PM me.

Fuckoffdailymailnobs Tue 05-Jul-16 13:58:14

Hi guys I have this and related condition psoriatic arthritis. I'm currently in a bad phase but there are effective treatments out there don't lose hope.

Kinderegg50 Mon 22-Aug-16 21:20:14

I've got A.S. I went years absolutely ok but it's got out of control now. I'm not taking meds for it though due to another condition. People I know who are on biologic treatment are doing really well and the A S is well under control

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