Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What is "life with AS"?

I only first heard the term AS a month and a half ago from my GP. I'm so new at this that I don't know what to expect, to think, or to feel. I started having problems seven years ago and no one could ever tell me what was wrong. Many doctors made me feel like a hypocondriac, so a part of me feels relieved just to know that I have pain for a reason. Still, I'm 32, have a great job, and just had my first child. All of this AS talk seems so surreal that I can't really imagine what life is going to be like. Does anyone out there have any advice for a confused newcomer?

Hi Stacy

Welcome to KA

I dont have AS, but my son does. What we did for Eric was get the disease under control, then keep it there.

Sounds simple.......right....Nothing in life is simple including getting your AS under control.

We tried lots of different meds until we found the one that worked best for him.

Some find that they can control the disease with diet. Go check out the NSD forum. It may be for you, and then it may not be.

Do stretches, and exercise never hurt anyone as long as you do only what your body allows you to do.

At this point Eric is in remission for the second time. Total remission....not a drug remission.

His miracle is a drug called Enbrel.

Things are usally pretty quiet here on weekends, so it may be the beginning of next week before you have a lot of people popping in to say hello and giving the advice that you are asking for.

Please dont ever feel alone, or feel uncomfortable about asking questions. The people here are a wonderful resourse that will be more than happy to help out a new family member. You see...we are one big happy family here.

Send Michelle in Md a PM about joining the womens forum.....You will love it there....it is an anything goes, let loose, and have a great time place to go!

Again....Welcome to our house!

Lori & Eric (mascot)

Welcome Stacy! I hope you enjoy visiting this site as much as I do .

Helen

Hi,

Hi and welcome to such a wonderful site. It is great for support, information and many laughs. Congrats on the new baby! Sometimes after pregnancies and births I would flare really bad. Most of the time I couldn't walk in the last few months. So hopefully after awhile it may just get a little better when your body settles down.

I have just come out of a flare! I was on Salazapyrin and voltaren. I told my rheumy that it wasn't working for me so he said fine stop it all. I stopoped the salaz but kept using the voltaren. Now I'm even not taking voltaren and for some reason may be coincidence but I'm feeling really good. For the last week I have been on the treadmill jogging and losing some much unwanted weight too! I am still very stiff in the mornings and my hips hurt until I do my stretches. Then around lunch I start to stiffen again so I do more and I have found that if I sit too long or do little movement then I must stretch. It is working wonders for me.

You should check out the NSD/LSD diet. It works miracles on some people, and others claim no change. It is certainly worth a try to see if it will help you!

Have you spoken to a rheumy yet? they may have some things for you to try being that meds or exercises.

It is very confusing on first dx but it will look less of a mountain in time to come and once you know what your up against!

Like lori said come join us in the womans forum....it's alot of fun.
Although I must say that Lori is the ringleader she makes us say and do all the funny stuff....... I'm always just an innocent party...lol.......

Sal

Excuse me, she says as her mouth is hanging open........I dont believe that there is an innocent bone in your body young lady! Dont worry....I will never tell.

Thanks for such warm welcomes. I will check out the women's forum. I have seen a rheumy - as you call them, it is easier to spell for sure - but i've only seen him once. He first said that i was undifferentiated and that it couldn't be AS because I only had damage in one hip. But that was based on three year old x-rays so I asked for new x-rays. Upon seeing the new pictures he changed his mind completely. He said that it was in both hips and the spine, sent me for more x-rays and then said he had to "confer" with another doctor because he thought my spine had started to bamboo. Needless to say, I left almost as confussed as when I arrived and 10x more worried. This is all so new and it seems to be happening very fast. I've had pain for several years in my hips, I've had iritis twice and many other things but no one has ever put it all together before. I don't know whether to be relieved or worried. When my GP mentioned that this could be the problem I assumed that even if I had AS, it wouldn't be that bad. Now I'm not so sure... I'm not freaked out - well not a lot anyway - I'm just trying to comprehend what I'm being told. The rheumy wants to put me on enbrel. From what I understand it is a good medication, but it seems like a strong medication and I was hoping that I wasn't so bad off as to need a strong medication.
Ok - that sums up the last month of my life. It really feels good to talk about things!
Stacey

Hi! It's funny that you said that no one had put it all together. Even after my diagnosis, with other complaints that I would run to my doctors with, they still didn't put it all together. It wasn't until I found this site that I realized that so many other symptoms I had were all part of my AS.

Helen

Hi Stacey,

Welcome to KA. Your story sounds very familiar. I was diagnosed 9 months ago and I was at first so relieved there was a name to my pain and then reality sunk in and I was also scared and worried. Now after finding out more information I am determined to beat this disease any way I can. Many people here have had success with Enbrel so it might be a good start for you. It is a decision only you can make. Check out all the forums there is much information to be absorbed from diets to drugs and a few jokes inbetween. Keep posting and asking questions and let us know how you make out . Take care.

Deborah

There is no drug stronger than a good attitude.

Disease! what disease, you walk like a penguin, but appart from that outwardly you look healthy, even though sometimes you dont look around but turn around, you can not purchase the good items on the top shelf or the bottom shelf in the supermarket as you can not get down that far or lean back far enough to see what is up there, but every body will see you are as healthy as a new born baby.
Sorry a cynical day, but you do have them from time to time. Do not expect much understanding from other people, as they can not see what you are going through, and there pain is always worse.
Our worse enemies apart from rheumy's is our selves, watch out for the I'm sorry for myself days, they are the ones to really drag you down.
Thats why this site is so important, thats when you will find out how many caring people are on this site, and know what you are going through.
Cheers Rat

Howdy Darlin and welcome to the worlds largest and closest family!
Yes yes, friends are the family we chose for ourselves, nice to have ya on board.

I am a similar diagnosing predicament as yourself, but a lil different.

What is helping me and my Drs is the differential diagnosing information at the American Acadey of Rheumatology web site. There are several criteria for dx of AS. If you have Bamboo chages on your spine this is a late stage disease indicator, and should prove a posative diagnosis for AS, with pain longer than 6 mos in the sacroilliac region, a test for the HLAb27 gene i useful as an exclusionary tool, not confirmatory. As well as a neg rheumatoid factor, a pos ANA, etc...lots of lil things that make the picture, but tha is a good place to start. Also te pain map, and the disease activity indicators, some found here, some on the spondylaropathies association of america web site.

Good luck to you sweety, keep us posted,
Best you and yours,
Bitty Buffy, aka Shu!!
ok, butt the kids gave me the name, ok!