Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group how old when diagnosed/took AS serious

You are doing exactly what you should be doing. AS should be taken seriously, but, put into perspective. The desease is different in every individual from Mild to severe. You need to keep up with the Rheumatologist, research, but not let it be the center of your life for as long as you can. Exercise is the key while you can and there is alway ways to adapt that too. I too was an athlete. I've had AS since my teens, now 51. It has only been the last few years that I've had to give in to AS and unfortunately has now become the center of my life monster. I was able to stay in denial for 30 years. I worked all my life until this year, raised 2 children. The best advise I have for young people is to stay informed, keep up with your Rheumy, stay active for as long as you can. Research is the key. Talk to others, especially those your age, with AS. Keep your focus on your future not on the desease.
Cindy

Eric was diagnosed at 9. He is HLA-B27 positive, as I am, as my mother is.

Eric is 17 now...he had a tough road for a while, but is fine now thanks to the biologics.

I think for women during child-bearing years they say it has a tendancy to attack the worst. So 25-34 is the period you want to pay attention to. Mine hit hard at 27. I really think women have a worse time with flaring symptoms before there period(sorry guys, i know you hate that word).
Atleast from what I've heard on this forum and read. There is a hormone present before your period that makes your joints more easily damaged to, because it relaxes your pelvis muscles.

Problems started when I was 12 - I was diagnosed at 29 by a Chiropractor - Now I am 50 and Fused

But the diet has given me great results and hope for the last 3 months. Thanks KA.

Brian

I do not believe women cases are rare at any age. I think with all they have to deal with they end up being undiagnosed or miss-diagnosed.

Try to keep a positive attitude. AS affects everyone differently. Some people never fuse and some have little affects on their lives. At age 26 mine started out in my wrists, fingers, and neck. I did not get diagnosed with As and RA until I was 47. I use a cane and a wheelchair if I need to be mobile for long periods but I still have my job, wife, and kids. Number one I have God for support and my Church.

So keep a positive attitude. You may be one of the lucky ones.

Tim

Jakira,

I am not diagnosed yet but my doc thinks i have AS. Im 37 now, pain started i was 3 (was diagnosed with juvenile arthritis at the age of 3)... prolly started from birth but i couldnt really complain about it until i could talk enough to make myself understood

The way i was raised, and i guess my own temper/personality made it so i denied i had a problem for all my life. In my teens and early 20's i used to be an athlete, and would just "suck it up" when i had pain (was also "eating" ibuprofen like candy). I thought i was invincible and nothing could "beat me", especially not pain. I became a physical therapist and was able to treat myself out of flares, now that was nice while it lasted

My denial phase came to an end last year though, where i got my biggest flare ever. I was unable to walk for half the year, i cant work anymore, being a PT is over for me. The pain became so much worse that i cant just "suck it up" like i used to before. I left my husband too, its hard enough for me to admit i have a problem, i dont need his own denial too (he was really not supportive).

So lets see. By denying i had AS all my life, i neglected to have it properly diagnosed and treated. I lost a career and a husband. I wrote this to show you i am an example NOT to follow. You are young, you have time to make the good choices! Dont fall into the same pattern then me, i can tell you, life sux quite a bit for me atm

Take it seriously. Try to exercise as much as you can, but if/when you have a flare, try not to "suck it up" and make it worse. Learn to respect your pain, try the no starch diet and follow your doc's advice. I hope when you reach my age your life will be more interesting then mine

Welcome to KA btw


Carole

Hi Carole

I have had pain most of my life and like you I sucked it up. Then 5 years ago when I could no longer stand the pain, thought I would finally tell my doctor about it. She just told me it's arthritis and get use to it.

My son's have had pains in their backs ongoing I tell them to tell their doctor and not wait. I am HLA B27 +, and I believe they are to. They follow in my foot steps with everything else, why not AS.

Hugs

Gerri

Hi there, I've been out of the loop for the last 10 days, but wanted to respond to this. My AS first began to evidence itself when I was about 15. My first full blown flare came 13 years later and lasted for 2 years. Doctors up the whazoo, but no diagnosis. 10 years later, I started pushing to find out what was wrong and was diagnosed within 2 months.

Thing is that as a performer and general, all round clutz, aches and pains were easily explained away. I didn't realize that what I was living with wasn't normal (in that, not all performers lived with this) for 20 years!

Hope that helps.

Hugs,

Hello! I am 25 years old woman from Greece. As you can see I am near your age.

Unfortunately, except from AS I have and Crohn's disease. But I used to suffer more from AS. Now I am on Remicade therapy and I am very well.

Before I discovered AS I was having a lot of pain for about 1 1/2 years (I couldn't sleep and many other things). My first symptoms started at the age of 18, then they "stopped" for 5,5 years and at the age of 24 my martyrdom begun slowly. But now I am perfect

I want from you to know that you are not alone! I hope that I helped your psychology a little!

Best
Natassa

Hello Jakira,

I was eleven first sign of knee swelling. Knee swelling again at 19 years, then sneaky back pain and leg pain by early twenties. By 25 years old I was certainly taking it seriously because I couldn't walk properly most days. I was diagnosed at 29 years old.

I am 44 years young now and I am feeling pretty good compared to my twenties and thirties. I had a back xray last week and it showed up with bilateral sacroiliitis. This disease is totally unpredictable


Best of luck - a crystal ball would be good!

Debra