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

Hello everyone

Thank you for all the replies to my previous post (under Anonymous). I have now registered after looking around your wonderful site. My sincere sympathy to everyone here, you must be very strong people to deal with your pain. My pain rarely effects my day to day life (night time is more of a problem). I find that when I am active and on the go I don't really notice it, but when I sit down to relax or lay down to sleep the pain gets worse.

To Cindy, great name also :-) , if my username gets confused with yours I'll change it.

Dwarfield - love the reference to the "cocktails", I've often enjoy the alcholic variety :-)

OK, so here are my questions:

Has anyone had a bone scan? Is it painful? (I am a big sissy!!) Would it show if AS is present?

Has having AS caused you to "change your life", ie diet, exercise, etc?

With AS is it possible for pain to only present itself on one side of the body?

Does anyone have psorarsis? (my father and sister have psorasis and I read that it is a commonly found in AS patients).

I'll look forward to meeting everyone.




Cindy

Cindy,
Number 1, yes I have psoriasis. Mine is real minor and only just an annoyance really. Glad to see you joined our group. I know you wont be sorry. Long before I was dx'd with as, my back pain only bothered me at nite time when I tried to sleep. Its only been in the last year or so that it became a 24/7 thing to deal with. I sure hope you can make it to the doctor and get a proper diagnosis. Its real hard to get one. Especially since I've been walking around most of my adult life and finally got it at the age of 41. Don't be shy about asking your PCP if he thinks it may be as. He may only scoff at the thought but at least it'll be in the back of his mind anyway. Keep us posted on your progress. I think you'll enjoy this site. I know I have and the people are fantastic.


Glenn



***************

What makes the hottentots so hot? What puts the ape in apricot? Whadda they got that I ain't got?....

Hello Cindy,

Welcome to the site, I'm glad you joined. I'll try to answer as many of your questions as I can, since there's not many on at this hour. Feel free to PM me anytime if you need to ask something, vent, or just want to talk.

Bone Scan: This is no more painfull than a regular shot. What they do is give you a shot of radioactive fluid in your are. They then have you stand in front of a metal thing which picks up where the fluid has ollected in your body. Using this they can tell if there is active inflamation going on and how sever it is. This is not, however, a definitive test for AS. You can have AS and not have inflamation at the time of the test. As cycles through times of flaring and times of calcification. If you do get a positive on the bone scan, it is a pretty good indicator that you have AS, especially if there are other symptoms present, and it sounds like you have those. Just to answer a question that you might have after reading this, no, there are no definitave tests for AS. That's why it is so hard to get a diagnosis. It is based on a variety of symptoms and signs.

Life changes: You will find a variety of answers here. For me, it has influenced my life quite a bit. The fatigue makes it so that I am tired more and do less during the day, but the pain makes it so that I can't sleep enough. I have been off of work a lot in the last few months, first with gall bladder surgery, then just from pain and ER visits for the pain. It has effected my social life, having to take pills all the time, being too tired to go out, being in too much pain to go out. I used to be a very reliable person, and still am, but people start to see you as unreliable when you start to cancel things because of pain. My marriage has suffered, because of a lot of things, but AS was an issue. Just for some hope on this issue, I have noticed that most of the people on this site have great marriages, it seems to me, better marriages than the average person without AS.

Psoriasis: I do not have this problem, but a lot on the site do. I am sure that by tomorrow you will get a lot more replies that can give you some insight on this.

Welcome to the family, glad you dicided to come abord.



Take care my friend

Daniel

Keep on keepin on Kicking some AS

Hi Cindy and Welcome! I am a new member as well. It looks like there have been many more join up here in just the last couple of weeks.
Although I don't pretend to be an expert here, there are so many here that have the knowledge and experience for any question or problem we may have. We are all very happy that you found us here.

It sounds like you have not been diagnosed officially yet. I hope that your bone scan comes back negative for AS.
The bone scan was nothing more than a really long xray for me. I am not too fond of having anything over or around my face so if this bothers you, ask them to cover your eyes until the machine has passed over your head.
Like you, my nights are the worst. I have recently been given a prescription for an antidepressant that works on chronic pain. Some nights they help me to get to sleep and some nights they don't. I am more aware of the pain at night and it will wake me from a dead sleep because of the discomfort.
Regarding life changes....lots of change for me and my family. Not all negative, have had alot of good come out of these changes! Just takes some getting used to.
In my case, AS presented itself in so many ways that I saw every kind of specialist there is to see over many years. It can change very quickly and affect different muscles and joints.
Yes, I have psor. too. A very mild case in only two spots. Seems to flare up more often than it used to. My Father has always had this but yet never diagnosed with AS (has hidden his aches and pains all these years but now has sore hips).

Well good luck in your testing, hope results are negative and that they find the cause of your troubles.

I wish you comfort and good health always!

Kelly

Hi, Cindy, and welcome officially to KickAS!

Questions.

Yes, it can and often does affect one side of your body at a time, it can be like a moveable feast. This is especially true with peripheral joints. I have a bad left ankle, the right one is fine. And I get heel pain only in the left heel.

AS (and spondylarthropy in general) causes pain and stiffness when you're not moving around, and especially in the early years you can keep active all day and feel fine but sitting/standing/lying down for any length of time causes pain and stiffness. For night times I use a muscle relaxer called SOMA, made all the difference, keeps me in bed a lot longer because the muscles don't go into spasm.

As far as changing my life, it was like a slow adaptation/modification until the last five years (I've had symptoms for the past 23 or so years). Then my life changed drastically, the SI pain (which is commonly felt across the top of the hips coming around from the middle of your back to your sides) and the back pain never went away, and if I tried to do something physical and simple (like raking leaves) I would be in agony after about 30 minutes of doing it and then for the next few days afterwards. But it is important to keep moving, exercising, have a routine. I do a 30 min. stretch every morning, and add a handweight three times a week, and try to walk 20 minutes minimally per day (easy to do, I have two dogs to remind me) AS can take many courses over the years, in my case flares and remissions and then the flares coming closer together, and then more or less constant pain and stiffness with little relief even with meds. My rheumy put me on a new DMARD last October (Arava) and I'm now as close to remission as I think I'll ever be, nothing can repair the back damage I have or unfuse my SIs, but I no longer have to plan my life around the pain.

So far no psoriasis.

Cheryl


Dogs know the meaning of faithfulness

Hi Cindy,

WELCOME to the KickAS (KA) site.

I had a bone scan done many years ago and it was not painful. And exercise does help me alot. You'll problably hear some tell you how diet has helped them as well. Hope to see you posting more!

Michelle

Wow another Sydneysider. That makes 3 of us. Great to see you joined. On the pain thing, i only get pain in my right hip, not my left. Not sure why?? AS hasn't really affected my life but i am starting to get more pain. I hope that the bone scans don't hurt, my first visit to a rheumy in a number of years next week so he will probably want me to have one.

Anyway nice to meet you...

Catcha round..

TreC

Hi Cindy,
Thanks for registering - welcome aboard!

Your questions.....

Yes, I've had a bone scan, and no, isn't painful at all. It was the test that finally confirmed my diagnosis. There are different types of bone scans - the one that might diagnose AS is a radioactive one. The other type will measure bone density to check for osteoporosis.

Yes, I've changed both my diet and my exercise regime with some, but limited, success.

It's possible for AS to present itself wherever AS want's to present itself! Dang disease..... I'm mostly a left hand side ASer, but I get symptoms in the right hand side too.

I have an appointment with a dermatologist later this month to determine whether or not I have psoriasis. It is indeed quite common to have diagnoses of both AS and psoriasis concurrently. Both disesases fall under the same category heading - the spondyloarthropathies.

Looking forward to hearing more from you...

Cheers without beers,

      Loz  

Hi cindy and welcome... you'll find more info here on AS than you'll get from your doctor! (In fact my rheumy told me to look AS info up on the web)
To answer your questions: no I haven' t had a bone scan. I was diagnosed about 5 weeks ago based on symptoms and blood tests... I was so aghast at that time, I didn't ask what blood tests he looked at except he did tell me I was HLA B27+.
Although I have problems with neck and shoulder pain, last year's Xrays were negative.
AS has changed my life. I have religiously exercised every other day at the gym with weights, treadmill and lots of stretching, stretching on alternate days, and I have learned to rest a lot (sometimes at lunchtime I have to lay on my office floor!).
It has taken away a lot, too. But I won't go into that right now..
I too am considering a trial of the No starch diet.
I am primarily affected on the right, but the left wants to get involved too, so I can't discriminate now can I?
My rheumy checked me over for signs of psoriasis and he thinks I've got a little, but I don't know. It's never bothered me, so I would tell you no.

OK, wish me luck today! I see my rheumy and got a lotta questions and gonna talk to him about going on DMARDS ....
Darla

"Starting today, your kindness will lead you to success" from a recent fortune cookie

Hi Cindy

Welcome aboard. I hope to see more of your posts in the future. Take Care.

John