Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I finally figured out what I hate most about AS...

It's not the constant nagging flu-like symptoms, it's not the stiffness or loss of range of motion; it's not the inability to do the things I once enjoyed doing; it's not the slow and painful fusion of my back and neck; it's not the horrible choice of either suffering pain without meds or risk infections and possibly cancer by taking meds; it's not the fear of the future and what I'll feel once I get there, if I get there; it's not that only I can tell how I feel and that others can look at me and think that everything is fine because I don't look sick or in pain; it's not that no one, except another AS sufferer, knows that AS doesn't go away, even if I have a good day.

The thing I hate most about AS is that it's like an earthquake. How? Well, I'm guessing that everytime the poor folks in California, or those who live anywhere else in the world prone to earthquakes, experience an earthquake, they might wonder if this is the big one; will the earth stop shaking, or is this the time that it keeps rumbling until their city is destroyed and their lives ruined.

Like someone waiting for the big one, I'll go through "good" periods, like this past summer, where my neck is stiff, sure, I have a bit of pain, sure, but for all intents and purposes, I feel pretty good. And then there's now: I'm in the middle of the worst flare I've ever had (I thought the last one was the worst); and now I wonder, as I'm in the most pain I've ever felt, the stiffest I've ever felt, and the most exhausted and depressed I've ever felt, if this is the big one: will this flare be with me for the rest of my life; will this be the one to take me down? Will the earth stop shaking this time, or is this the one that destroys me.

I'll keep you posted. Now it's off to yet another hot bath!

Hot baths work!

I'd buy a hottub in a secnnd if i had the cash.

Pete, most of us here know exactly how you feel because we've been there. This disease is very unpredictable and has many stages that you will go through. As you get older it usually becomes less painfull but your range of motion will be less and you may have fusion of the spine that leaves you in a stumped over posture. The more you do when you are younger the better you will be when you are older. Take your meds,get into a regular excercise routine including stretches and swimming (at least being in a pool) and eat properly along with keeping a positive outlook. I know how hard it gets at times and the flareups can be awful but like I said,it will get easier.
You're not alone my friend,
Steve.

Pete, I too know what you mean. I guess all we can do is enjoy the good times and try to remember that they exist during the bad times. It would be a very lonely existence without all the folk here at KA, that's for damned sure.

Hot baths with a ton of Epsom salts are awesome. Don't follow the directions on the package as to how much to put in. Just dump it in until the water won't absorb it anymore. That way, you'll mostly float in the tub, so your back won't make as much contact with the tub.

Take care of you.

Many hugs,

Pete,I know how you are feeling because today I could not stay out of bed: my back hurt so much, and I don't know what happens that even my hands are uncontrolled (they are not working and hurt).

The only thing that work for me are the hot bath, but I am going to try Inanna "Epsom salts". Thinking in the hot bath with less pressure sounds great.

Pete, I was very recently diagnose and my body is like going sick so fast. I still feel angry, specially days like today that everything hurt and when I try to do things like open some can, or cut something my hands simply don't work.

Anyway, I am going to call someone to get the Epsom salts, and get my hot bath.

Pete, when you feel bad, think that you are not alone, this is the way I try to look at this, and as I have read here there a lot of people like us that have improve, so we will do it.

Zaida

That's very nice of you, Zaida, thank you. I hope the hot bath and salts work for you. The relief is temporary for me, but it helps me sleep at night if I take a bath right before bed.

Part of me just wants it all to get so bad that I can't feel anything anymore. I'm tired of it getting bad, then getting a little better, then getting worse, then getting only slightly better. It's like a drip, drip, drip kind of torture. Better that all the pain comes so I can know what I have to face.

Again, thank you all for your kind comments. It's no better today and in some ways even worse, so, yes, the earth is still shaking here in Pittsburgh, PA.

It's crazy how fast things can change.But we have to try to think positive because that's all we can do to keep from going insane.GOOD LUCK!