Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS... To Be Or Not To BE

I Sometimes wonder if I really have AS... I was Diagnoised a year ago. I have the blood factor for it But I do not get the ongoing pain that I read about in other peoples posts
I have never been stiff getting out of bed. I never get advanced warning of impending flares. The Pain comes on Immediatley
stays for anywhere from a half hour to as much as 9 or 10 hours. The Pain Leaves me as fast as it came on.. My lower back and my neck are stiff often but no pain
The pain that I do get usually starts in my right thigh or hip then travels to other parts of my body.
I am on Methotrexate and prednisone and I find that I can soothe some of the pain by popping a couple of Tyenol
Maybe I am not as advanced in this Disease as other people but I sometimes wonder If I have AS at all.. Comments Please

Richard

I'm wondering what your X-Rays show? If they don't reveal any structural damage then I'd guess that your idea about disease progression might be a good one?

Or you might just be lucky? Why not? We all know there is AS and there is AS, you could simply be someone who is lucky enough to be able to deal with it in a way that isn't that much of an intrusion in your life. Even if this were the case, who knows if that would last forever? Of course, we all hope that it would or even get easier for you - like no drugs at all?

Of course, no AS at all is something for you and your health care team to work out. Although no one could tell you one way or the other over the internet, your questions seem valid enough.

Hope you can either get the answers you need or come to accept the ones you already have.

Take care of yourself,

Chris

as you must know from reading my posts,
i ask myself every day "i wonder what is going on inside my body"....
i can't even figure out my own body.......

i'm like you in the respect that if it only matches somewhat and not exactly,
maybe its something else?????

sorry i can't be more help.

i guess i'm just encouraging you to keep questioning things if you feel unsettled about it.

sue

I know what you guys mean.. Some days i feel alright and i wonder whether the Doc is right about my diagnosis.. Im "luckily" not in pain all the time. Although i have been told that i am still in the early stages.

As people keep saying everyone has different experiences with this type of desiese.. I really hope yours stays as it is.. or disappears!

Sonja

I am so thankful that your pain is not ongoing. Mine wasn't either a few years ago. Maybe yours never will be and also pain is relative. Maybe I am wimpier than you are.

If you are really wondering, you might consider getting another opinion and stay off the MTX unless you just have to be on it or maybe that is why you are better.

I don't know what the answer is. Just keep on not hurting all of the time.

Blessings.
Possi

Do you get Iritis inflamations in your eyes? That's how I was diagnosed. Amen to all of you somedays are worse than others. I had the worst night with my back last night I didn't sleep at all. And it's been pretty good for a month.Who knows what I did to flare it up.
Tina

Tina
I never had a Arthritis problem until after the retina in my left eye detached... It was about a week later that I was Sent to A Rhummy that Diagnoised Me with AS
Since then I have had occasional flares, getting longer in duration,, The thing that really bothers me is that I have no pre warning as to when the AS will flare nor when it will subside,,, My social life is now non exsistent


Richard

Richard, Are you on any meds? Did you have the HLAB27 test done when they diagnosed you? I am on Remicade & Methotrexate.
Tina

The problem is that AS on diseases like it are not the same as having a sinus infection, diabities, or even the flu. This is a complex disorder that affects different people differently. The doctor is looking at symptoms do you have hla-b27, pain in SI region, stiffness in moring, 20 - 30 age, ect. We basically now what causes it and can classify it into autoimmune disorders but everyone will experience it differently.

I fought having anything for years and kept blaming it on my own neglience and laziness for not stretching and being more fit. In the beginning I never got morning stiffness and I also never had that much pain. When I did I just gritted my teeth and got on with it. Always got prescribed stuff and took then went off it back on, Then you find yourself changing things a bit more - maybe a sleeping position , maybe the way you walk or get out of car, sooner or later you finally start doing this out of habit and you think to yourself why do i do this and none of my friends and family do? I think I only started realising i was not indestructable when a close friend got rheumatiod arthritis and then another had a heart attack and this is mid 20s. Things also got progressively worse.

Ok im rambling anymore im going to hit life story mode and i still have to take the time and introduce myself formally on this site.

Basically this is how it is. IF you get PAIN and you cant figure out why, start looking into it. IF you get PAIN while doing something and no one else does , take note. If you start having to adjust your lifestyle because of your pain ....then really take a look at thing. Just the fact that you are asking questions and are on meds indicates that something is wrong.

All I can say is this.....Do not give up trying to find out. Trust your gut. Take the time to really get to know yourself (eg: pain journals, personal diarys etc....) Try and be patient and know that life always goes on.

i hope this helps PM me if you want

Regards
Iain