Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Initial "gut feeling" when AS first struck

Not wishing to be morbid on the brink of 2010, but when AS first attacked me for real in 2007, my gut feeling was that I was "on the way out".

What were others feelings when AS first struck?

Changing the subject - Happy New Year!

When AS first attacked my doctor gave me a prescription for Indocin for 2 weeks. I thought I was cured. Then it came back two week after the Rx ran out. I changed doctors at that point he diagnosed me with AS, and put me on indocin full time. He also told me no running, no skiing, and no motorcycles. I thought if I won't be able to do this in the future I better do alot of it now while I can.

When I eventually got diagnosed after 23 years I was told Id be in a wheel chair and thought I was finished too.
Kevin

Mine hit after trying to dig through hard, Georgia clay to plant the live Xmas tree I had purchased; my aches and pains didn't subsist for months. I didn't quite put two and two together for awhile, but after fearing I might have cancer, I realized that the AS that afflicted my uncle and my brother might quite possibly have finally reared its ugly head in me. One trip to the doctor and an HLA-B27 test later (positive), gave me my diagnosis. I'm worse off now than I was 5 years ago, and I fear I'll progressively get worse, especially if I don't get health care coverage soon (come on, Congress, pass the thing already -- daddy needs health care!).

Although I have RA, not AS, I've been lucky in one way that I developed this in later life (a couple of years ago and I'm 54 now).

My first feelings were astonishment - what the hell is this and how can it be this bad so fast?

Thought it was just running injuries at first...until my toes became inflamed for no good reason. So mostly I was confused and frustrated. But it was my feet and dactylitis that helped get the proper tests and doctors involved, and which led to that initial A.S. diagnoses. And then I felt mostly relieved, as I finally had a name for this thing, and some treatment options. Before I knew it was an auto-immune disease, I thought my body was just breaking down, and that it was all my fault for running too much, not stretching enough, or for just doing things wrong somehow. After diagnosis, I knew it was no one's fault, and stopped being hard on myself. And then of course I REALLY felt better after getting proper medication. Day-to-day, it still stinks knowing that I've got a "chronic disease" (hate even thinking that term, but it's true), but I accepted that fact and moved on pretty quickly.

I was both terrified and actually a bit relieved. All these aches and pains had been getting worse and worse and I thought *everyone* felt this bad by the ripe old age of . . . 40. By the time my neck pain was so bad I couldn't turn to the left I was resigned that it was just degenerative disc disease and that there was nothing that could be done. And the hip, low back, and foot pain too. Learning it could possibly be AS, or in my case just Spondy with no fusing, meant there could possibly be treatment!

I still have very bad days where I feel sorry for myself. But on days when the medication seems to be just right and I feel a bit better I am much relieved that at least now I have the right rheumy and some drugs to try to improve things, rather than just sitting home and suffering. Is that weird?

One thing I didn't say earlier, is that I had a suggested diagnosis of AS first, before further progression made it clearer that it's actually RA. I'm not sure that RA is any better a diagnosis but I was scared about the idea of AS because of the potential for fusing and kyphosis. By the time I got the RA diagnosis, I had become somewhat familiar with the idea of inflammatory arthritis and RA is better known and easier to explain to people than AS.

Although............ the problem I have with the explanation of any inflammatory arthritis is that people immediately start telling me about their arthritis (osteo) and typically have no idea of the severity of RA.

As far as I knew, I was a fit, healthy, strong military officer with a promising career ahead of me.

Then one Friday, I wasn't terribly careful and hurt my back moving computers at work (like 40 of them) and by Monday I wasn't exactly moving about all that well. I had put my back out before but had always blamed some activity or another for it.

When it wouldn't get any better despite meds and physio and everything else, my doctor ran some blood tests "just to rule something out"...oops.

Then when I was put on Voltaren to help with the AS, I was laid out with a bout of UC that landed me in the hospital for three weeks.

I wasn't thinking a lot about AS at the time as the UC was immediately life threatening (dehydration) and radical surgery was a serious consideration.

Although I describe my experience as being "hit by a freight train", when I think back on the past few years, I've been slowly robbed of more and more of my life and things that I loved...and dreams...ugh.

Oh well, whatrya gonna do eh? We carry on and do our best, helping each along as best we can. Maybe this is the year where I'll begin to climb back out of this hole and take back some of what I've lost?

To hell with the pain,

HAPPY NEW YEAR EVERYONE!

Something to boast about when in the pub.


To be honest, back then no one had ever heard of AS, so actually all I received were words but they were fairly meaningless.

They mean more now, after Kyphosis, fusion, a touch of screaming agony here and thee, imobility, indigestion, well now if someone told me today that I has AS, well I might have a rough idea what they meant........