Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group More Questions

welcome to the site somone always has an answer here to what ails you, if not go to the jokes forum they are dire but they make you laugh and that helps the pain. LOL Elspeth

Hi Cindy,

And welcome again!!

Your questions: I haven't had a bone scan. But I don't think they are any worse than a CTscan. Just a shot, to make you glow.

I first went to the dr for back pain in my teens, but was told it was nothing, since I was too young to have arthritis. I stayed active, and that seemed to help. The pain adn stiffness was worse at night. I'd sleep a few hours, then get up for a while, then sleep some more. It progressively got worse over the next 20 years, till I finally got to where I was having trouble walking. Back to the dr, but this time, it's all because I need to lose weight. I started searching for the answers and everything pointed to AS. My eye dr gave me a referral to a rheumy and the rest is history. AS has drastically changed my life since I turned 40. Before that, it was there, but I could work off the stiffness and pain. Until I started the Enbrel injections, a good day would allow me to get out of bed and dress without assistance. But the fatigue would eventually get me down, and the pain was excruciating at times.

The one side of the body thing, I noticed that over a year ago. Left hip, left shoulder, left elbow, left side of rib cage. My first big flare was only on the left side. Didn't last long as a few months later, nearly every joint in my body was inflamed. AS is funny in that way. Knee hurts today, but tomorrow it will be a elbow. Seems to like to jump around.

No psoriasis or in any family members that I know of. (And I hope I didn't speak too soon.)



Hugs,

Cindy

Welcome Cindy!
Sorry that you need this place, but it is a great place to bee when you do have need of understanding and caring people!
Your questions have already been answered about the bone scan..a piece of cake. It can't diagnose your AS but can throw another chip in the pot of "for" or "against".
Life altering: Yes. Varies upon what you do, how your pain exhibits itself, and how long you've had it, I guess. It's one of those things that's different for everybody, and can even be different every day depending on how you feel.
Pain used to be only on my right thorasic spine in the morning, but loosened up as I got mobile. Also, very uncomfortable in the low back upon sitting or standing, or doing something strenuous. My symptoms have increased over the years, and am seeing a rheumy for the first time in 8 years on Monday, so hopefully I'll get more answers and better treatment.
Welcome, and keep posting!!

Hi CindyOz,
I haven't ever had a bone scan so I can't speak for it. But I do have psoriasis with my A.S. It can be agonizing, always flairs up when I am in the most pain. Also, yes A.S. does tend to favor one side of the body more than the other at first, but you will find that with time your other side will start flaring up because you have been relying on it the most. As far as diet goes, I did at first go on several diets that were meant to help A.S. but found that I was much more pleasent to be around when I could eat what I like. As far as how it has effected my life, it has changed more things in my life than religion did. A.S. effects everything, including marital activities. And you will find that it even effects your attitude. Many people suffer from serious depression with A.S. I have in the past had this problem, but after you have had A.S. for many years you learn to accept your limitations and just make the best out of your life in the best ways that you can. This forum will help you in many ways, but the most important way it helps is being able to discuss things with people who truely understand what having A.S. is all about. Anytime you start feeling down, make sure you get on this forum and chat with someone. It helps greatly!!!


Somedays it just doesn't pay to get out of bed.

Cindy,

I'm also from Oz, Melbourne. Welcome to the site.

Don't be worried by the bone scan, the injection is all that hurts and that doesn't take long.

Hope you stick around this is a great site.
Take care and keep smiling,
Rose

Hi Cindy,
Welcome to our big familly...For all your questions i think the other members answered you and i would only repeat myself...lol
Hope you like this place as much as i do and welcome aboard once more.

Michel

Hi Cindy, and welcome to KA!! I'm from Perth!!

You've probably already got all the answers to your questions but.........

Yes - I've had a couple of bone scans, and NO, they're not painful at all (just uncomfotable as you have to keep still for so long, like a CT scan or an MRI. I don't know if it would show whether AS is present or not, but it certainly shows up areas of inflammation.

Yes - I've had to do yoga every day for almost 30 years - it's the only way I've been able to stay flexible and mobile. I've recently started belly dancing as well, which has helped me regain even more mobility (I hadn't been able to drive for almost 2 years before then!), and it's so much fun!!

As far as I know, YES, it is possible for AS to favour one side of the body, but not necessarily exclusively.

Possibly - I haven't been dxd with Psoriasis, but it is in my family, and I do suffer from some kind of flakey skin problem, usually on my scalp.

It's lovely to meet you too!
Sue

Hi! The best advise that I can give you is for you to take of yourself anyway that you can. When you have a flair-up you have to fight because no one else can fight for you. Cut back on every activity that you can (except physical therapy) and learn to say NO.

My other piece of advise is that you have to be assertive in your health care program. Learn all you can and make sure that your doc is one who will listen to you and make sure that he is one that understands that you probably have more knowledge (if you don't right now you will soon) about your illness. After all it is you who is suffering and not him.

Last but not least it is NOT all in your head and don't worry if everyone is not sympathetic to your pain. We are here in KickAS.org. We understand, been there, done that!

And (sorry) it will get better, it just takes time!

See you around

BonnBonn