Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Flare ups

(Disclaimer: AS under consideration, no diagnosis yet!!!)

I found that earlier in the year when I first started getting symptoms, that the pain was almost constant for about three months. After that, it settled down, and now I tend to get what I describe as flare ups every so often.

At the moment, I can go about two weeks OK - just general stiffness (particularly in the morning) and a few aches and pains - then I'll get a period of about 5-8 days where the pain just explodes everywhere! Every joint is painful, I feel tired and depressed. As if by magic, these seem to clear up as quickly as they come on. I reckon that now I can just about tell when one is coming on.

I wonder if anyone else finds they experience this. At the moment, I'm tending to make the most of the good weeks because I know that on that bad weeks, I don't feel much like doing anything!

David

Hi David,

I'm sure someone will respond with something helpful / intelligent soon. I don't know about flares, myself, yet. My pain is constant - a 3+ year long flare? Yeesh.

David,
Sounds like pretty much all of us on here. I have less and less flare ups due to my Humira but still have "those days". The faster you are diagnosed, the faster you can start trying to slow it down. The pain does not have to be the "normal". Fight for some answers. You are the one who has to deal with the pain on a daily basis. Hope you get some answers quickly and start to feel better!!!! Good luck to you!!

hi there david...what age are you?

John

I'm absolutely ancient...26!

does the back pain wake you with a sickening intensity at 5 or 6 am? a sign of early onset AS

Up until the beginning of this year, I slept right through the nice (8 hours regularly). Since the onset of these symptoms, I've been waking consistently at about 5:30am. Sometimes, there's no pain, but often I'm very very stiff and have to stand up and walk about to relieve it. Sometimes it then settles down, and sometimes it doesn't (see this thread for all the other symptoms lol https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=419031#Post419031)

those were my symptoms in my early 20s,the onset of AS...i was to turn 31 before they said "we think it MIGHT be AS" it was AS alright....it's a very hard time you are going through just now kid,keep as fit and active as you can and don't overdo the drink "to help myself to sleep" i am 55 and thats the BEST advice i can give you.

IF you have AS,generally you alone can determine how badly it will affect you


take care.if you need to talk..........

john

I've already commented on your other thread (about seeing the useless rheumie) but it occurred to me that as you are in the UK you could try some more direct tactics to get the message through to GP or rheumie. In particular, I believe the poster in this link is being sent out to all GP surgeries:

http://www.nass.co.uk/documents/SFactorBackposter.pdf

You might want to print it out and take it in to GP. Ask directly about inflammatory back pain. Ask for a second opinion, and get the GP to write a referral that specifically mentions your history and some fairly definite symptoms. Ask about NSAIDs or other treatment you could try when you are in a flare. (If NSAIDs work, then chances are it is an inflammatory condition).

Hi cemc,

I think your words offer very sound, thoughtful advice. And that poster campaign is brilliant, as is the idea of printing a copy to take in to an appt with a family doc. That makes a great aid to help someone advocate for themselves!


GPs are just so swamped with mechanical back pain patients, that inflammatory back pain can be missed too easily.

Good find!
mig