Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Question about "flare ups"

Hi Everyone,

I am a new member and this is my first post, thought I would start by saying this is a great site! I've just been hanging around and taking in all the info I can from everyone's post's so far. I have now come up with my first question. I'll let you know a bit about me first, I am a 29 yr old male and was just diagnosed as having AS 2 weeks ago, I guess it started one day in late 1995 when I woke up in the middle of the night with an extreme pain in my lower back and butt, running down to my feet. Since then my left knee has become swollen and painfull several times and my whole back feels very stiff.
I have tried all the NSAIDS and can't tolerate anything but ADVIL (which does nothing). My doctors tell me I have a mild (mild?) case of AS so they don't want to give me anything else because they consider the side effects to be worse.

Anyway, my question is......
I keep seeing people talk about "flare ups", does this mean that the pain will eventualy go away (please let it be this!) and return occasionaly as a "flare up", or does it mean the pain will become worse than it is? I have had the extreme pain every day without it letting up for 6 years now.

Thanks,

Kiril

Kiril,

Hi and welcome! I too am a new member. What NSAID's have you tried for your AS? I hope that you find something that works for you without bad side effects. I can't imagine Advil doing the trick.

I cannot answer your question about flare-ups, but I wish you well with controlling your disease process.

Kristin :)

Hi Kiril!

Welcome!! I can't speak for everyone here...but my flare-ups come and go about every couple weeks or so, and last about 2-3 days....My bad flare-up's are about 1-2 weeks and those are the "hot...shooting pain" one's...that make it difficult to walk around without my handy-dandy cane.

I'm sorry to hear about your constant pain. I had symptoms for about 1 yr before being diagnosed May of this year. I don't tolerate NSAIDS either...they tear up my tummy. The only thing that has helped me is cortisone shots in my hips and back...but not the long-needle cortisone shots
For some reason when I had those done outpatient...it triggered off an even worse flare-up!

There is plenty of info here and I'm sure some well -informed Askicker's who can let you know about the NoStarch Diet...which has helped some members a great deal. This might be something you might look into...

Take care and welcome again!!

Toodles!

Hello Kiril
When I speak of flare ups I"m just referring to those periods of sharp pain usually caused by inflammation gone unabated. SO I guess a flare up could be six years. When it started out manifesting itself in me I pretty much went through what you are goin through now. Basically nothin but sharp pains to differing degrees fro about 12 or 13 until late teens.

I was able to get periodic relief that mollified the pain somewhat. Keep tryin to find what works for you. If the NSAIDS are the way then try changing where you sleep, mattress or diet (see LSD or NSD) or use some alternative treatments.

I think Doc's say "mild case" when the X-rays don't show any bony changes.
Usually this is the time when the pain is the worst. SO don't let the diagnosis belittle the pain your in cause you'll start doubting yoursefl.

Keep tryin stuff and stay active. Nice to have a chance to say , hello.


stevec-they also serve who stand and wait

I finally got my dignosis about 20 years ago at your age.I had hip problems at 19 but got major problemsat 36.NSAIDS finally got to my kidneys,no more of them for me.I would ask your rheumy for Enbrel .I was at the Spondylitis Association semianar all day in San Francisco last week and it sounds like the best weapon the rheumatology guys have.I have been helped by it.The side affects are minimal.I have a hunch that it does the most good for the newer patients.Check out Evelyn's posts if you are intersted.the differnce in my flare to non flair condition is weather or not i can roll out of the sack and go to work.
kev

Helo Kiril...welcome to the site.
For me I am in pain all the time and have been for the last 20 years or so. Sometimes it is just a dull ache thats just strong enough to say it's there.
I would call a big flare up when the pain is off the scale and I have to start using the big pills (Tylenol 3 with codine,Demerol and Cyclobenzaprine) along with my regular stuff. Fortunately these only seem to last for short periods( I day to 3 weeks).
My regular flare ups can be for longer periods with varrying degrees of pain from different parts of the body and are usually triggered by big weather changes or from doing something I probably shouldn't have been doing (ie: laying on the garage floor trying to work on my car).
But as you will find out, just about everyone reacts a little bit different as they go through the different levels of this condition.

Dan


Who knows what the drugs will do to us?

Hi Kiril,

Welcome to Kick AS. Glad you came aboard. If you've been watching for a while you already know this is probably the biggest AS reference library in the world. We have come by this knowledge mostly through the "been there, done that" method. So in no time you too will be a professor of ASology....

We all use the word flare, or flare up. In general it is any increase in your pain level. So if you are pain free, a little pain could be considered a flare. But usually if we speak about being in a flare, we're talking about major pain.

I see your doctors believe in rating AS. I don't think that is fair to you as a patient. Many doctors are under the assumption that AS is a beniegn disease. Well it isn't. A mild case can turn wild in a very short time. That is why I wish doctors treated AS with a more Pro-active stance. Get right after it.

As you can see, AS isn't a death sentence, but it is a life sentence. So Kick AS.......

Chris

Hi Kiril,

Sorry for such a late response to your post but today was the first day in a while that I felt good enough and had time to actually read some of the posts I had missed. First of all...Welcome to the KickAS family! I have been diagnosed with AS for over 3 years but before that I was diagnosed with JRA ten years before that. AS is not a disease that is easy to pinpoint. I have had flares that have lasted for just a few days and then have had a bad flare that was a couple of months long. I hope that you are feeling better and your flares are now quiet.

Take care and welcome again,

Lisa