Help! I was recently diagnosed with Ankylosing Spondylitis!?

Question

I am a 32 year old female I have been suffering from extreme fatigue, neck pain, hand joint pain, and general back pain. My first ANA test came out posite 80% speckled after seen various docs and 2 rheumatologist they redid them and the ANA came out positive agan and also the HBla27 I think marker gene for AS. So after discarding Lupus my rheumatologist diagnosed me with AS and Fibromialgia. He gave me muscle relaxants to take at nigh and antiinflammatories to take when I felt to much pain. I started to feel better but after a couple of weeks with extre stress and lack of sleep it seems I am taking the anti infl. every night and I feel like I am getting a flare up. Does anybody have an idea of what exactly should a person need to know to cope with this disease, like an organization or something? Like what shoul I eat or not eat, the hours of sleep the excercise...is stress a big factor for it? I would really appreciate the help and info anyone could give me.

THANKS!

Answer 1

If you have AS - and it sounds like you do - you should see a specialist, typicallly a rheumatologist, who has treated AS.

If the rheumies you have seen are prescribing anti-inflammatories "as needed", they really don't sound like they know what what they are doing. AS patients need to take anti-inflammatories daily - the question is which one(s) and at what dose. An experienced rheumie will work on that basis.

There are exercises that may make a difference - posture is really important. There is a lot of noise about diet, but I am not sure how much of a difference it makes. It is helpful to watch your weight, though.

But, in the end, medication makes the biggest difference.

I was diagnosed with AS 15 years ago, and have been symptomatic for more than 20 years. It is not easy, but it is manageable.

You can get local rheumatology references from the SAA.

Good luck with it.

Answer 2

Although, YAnswers can be a good place to ask questions, I think I would recommend you to visit other websites, message boards, etc. with people that have your speciifc disorder. You have a serious painful disorder and people who have the same condition may have better recommendations for you.

I have a serious medical condition where I belong to some message boards and indeed that is where the expert information is at.

Answer 3

Bless your heart. My grandfather had AS. My mother, uncle and cousin have AS. Here is a website that might help you:

http://www.spondylitis.org/

I hope it helps provide the information you need.