Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group what is the life expectancy

after you have tried the NSAIDS and can no longer take them b/c of ripping up the GI/IBS GERD etc, and then you try the humira enbrel etc, and cant take them, whats next?
how long does this go on before you give out from shear exhaustion of your system?
i am beginning to think i am only kidding myself with the all and will probably drop dead from it all ( meds diet) within the next couple of yrs. i am 50 now and feel like i cant take the abuse this has caused upon my system, over loaded with it all. and the diet dont work for me either.

well was told once AS suffers have normal life expentancy, now i dont believe thats true for people with severe AS but WTF do i know, i my self have thought about an early end!!

hi there,
i think we had a post on this recently by dan...i cant remember the name of it. but i wish i knew what was next as this disease varies from person to person. i myself had symptoms since i was 6 years old--knees hands then back at 16..then full blown insane pain almost 6 years ago. here i sit another new year at the age of 37.

i too cant take nsaids. i'm allergic to almost every single one of them and to aspirin. enbrel..i am allergic to that. i am hoping to get remicade soon. sounds like you've had more than your fair share of surgeries and that in itself can be depressing. i had back surgery [lamenectomy with fusion L4/L5] and that took me really for a loop in life. all i rely on at this time is my muscle relaxers and vicodin and hope for something in the near future.

i wish i had something to offer as a miracle cure but i can only offer my support and understanding of this terrible AS monster. i think for the most part i try not to think about how much longer but keep myself busy trying to stretch when i can, walk when i can and play with my children when i can. i think most folks with as have an average life span although at times it really pushes us to sometimes want to think otherwise.

hang in there!

thank you i am just really down. my husband just doesnt know what to do with me anymore and neither do i.
have been to so many docs and i was so dam normal just 4 yrs ago before my crash, i may have been a-symptomatic but at least i felt decent. it is awful to watch your body deteriorate and hope you can get by when docs dont have all the answers. i search and search on how to handle this for myself. i am depressed and upset.i am not a normal test book case when it comes to illneses ie, i do not show abnormal bloods until pushed to the very brink of an illness otherwise everything comes back normal. my appendix was taken out and i had normal bloods with that when i was 18, and in fact i had pain on my left side instead of my right side, but the bloods were normal, my gall bladder i had pain from that in my back instead of my right quad, and i was full of stones. my system is wired strangely. about the only thing i did right was to have a baby that came out of the right spot. when i try to tell my docs this they ignore me. the only time my bloods show anything is when completely pushed to max then it will show some changes but in the mean time i am at deaths door it seems. i dont know why my body reacts like this

Hi all,I always remind my self there is always hope. I look around in friends and family and see so many situations where I can not possibily see how change can happen,but it does miraculously .Just because you can't see the answer it doesn't mean there isn't one.I will be thinking of you Dave

Missi,
I am also done with all the meds out there and will be 50 this year. I have lived with AS for more than 30 years, more like 35 or 40, many many surgeries and now am just on pain meds to keep me functional. I like to think that life expectancy is what I make it or whenever God decides I've had enough. Even during my darkest moments, that seem to be alot lately, I will never give up hope that there is something just around the corner if I don't give up. If I give up now I will be defeated and I refuse to let any desease defeat me. Hang in there, don't give up, help may be just around the corner.
Cindy

That which does not kill me only makes me stronger!

gosh thanks everyone i am just so lonesome with this illness and all i want is to be there for my kid who's gonna be 21 next month, and hope i can be a good mom for him when he has a kid or find someone to marry someday and fearful that this has gotten a hold on me and i cant shake it. i am tired of docs glancing looks when i ask for a lousy pain mmed, here in fl it is like you are a criminal or something big deal i take 2 lousy vicodens a day. but cant take NSAIDS either. i am sorry i sound like a whiner as there are peeps out there who have it much worse than me and at 50 at least the better part of me life is done and i had a life anyways mostly pain free.

hey lady buggie are you in florida somewhere?

Aloha All.

I really like you guys. I know that feeling bad causes brain fog, but life can still be pretty cool.
I have a neighbor who looks as though he shouldn't even be alive (not AS, something else even more scary), but he's in a zippity little wheelchair, at age 70 probably weighs all of 65 pounds and has been that way since college. He's endured years of pain but he is a pleasure to be around, inspires everyone and will no doubt have buildings named after him (at least grandchildren named accordingly).
My mom is completely fused, has lost/misplaced 6 inches over the years and - I don't know if it is because she is from that greatest of all generations or just her - do you know she wakes up happy to see the start of a new day? Always a twinkle in her baby blues and a positive comment and words of encouragement for others. She writes a monthly community newsletter and last year knit 50 sweaters for kids in Afghanistan! I'm not making this up
Oh yeah, she's almost 84 - severe AS, but lots of new parts.

Personally I have a long long way to go in the happy camper department, but I can tell you this... I look to people like this for inspiration.
They tell me a good laugh once in awhile is important. At least if I keep laughing at myself I should be able to stay pretty amused.

Best of luck and hang in there...

awww missie..dont give up! i know this as can try to really push the bounderies on us...especially with our personal life. our partners feel so helpless and try as they may to understand all they can do is be there to listen and support us and love us and more when we are down.

dont EVEN worry about textbook cases...ahem...i am unusal so to speak and my kickas pal aloha ben will 2nd that. lol as any reaction or abnormal test that can happen, it happens to bug.
my blood work comes out normal on all aspects except the postive hlab27 and a postitive ana [border] my sed rate has only been slightly elevated a few times the last 5 years and usually comes out w/some liver test that is elevated in children & persons with bone deterioration or inflammation. thats ME.

of course my mom has arthritis & my grammy but they can take aspirin. me, i get huge hives. The 2 times i took it. First time they werent sure what it was that caused it. I had swollen lips, trouble breathing & hives everywhere. that was with ONE aspirin. motrin...sulfa..vascular reaction. then of course my xrays were normal semi for years...i had fusion in the si joints,but it wasnt till this past yr that the damage showed up. unbelievable after all the horrid pain.

appendix! eek. i still remember my mom. she had just slight symptoms before it burst. she was in a bad way. i thought pain for that was on the left side? my gallbladder was on the right. I had gall pain on right side. even then when they took it out while i was 6 mos preggers i STILL had pain. they thought i was nuts. WELL..lo and behold..come c section time...they found more that had escaped.

each persons body reacts differently and only YOU know what feels right. so please hang in there. are you on any meds that might help you with depression possibly? even if it might be short term. sometimes a med can cause it too. try to get out when you can. the fresh air does the soul well. even if its to just sit outside. i know the weather is chilly right now. i bite my tongue from pain every day but i dont let this disease win. it kicks me down..but i make myself get up. i may be small..but i wont give up. i wont give it that. ever. you're just in a bad spot..and after my back surgery i was like that. i was crying and so sad and emotional. you will make it..

oh and i'm from texas !! texan bug!
feel free to pm me any ol' time..i always am popping in all day and night...its so nice talking to you...