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

Hello there.
I just found this site last week and have not had time to sign on.
I was told in Feb that I may have this lovely AS-- I tested positive too-- my doc does not think I have it but the more I read about it the more it makes a lot of sense. I had new xrays done last week, last ones were done 5 years ago, so maybe they'll tell us something. Maybe not…

It was a walk in clinic doc who told me I might have it-- I had never really heard of it.

I have had back/hip problems since I was 18-- it's been over 22 years. I have an SI joint that is cranky (as my physio puts it-- BTW, he also doesn't think I have this). I also this winter developed arthritis in my shoulder. Oh Joy-- I can handle that one though….

What is extremely unpleasant though is when I make a small move the wrong way-- and end up in excruciating pain for 3 weeks. Not fun. This time I lifted a sort of heavy box with one arm-- ooops. Then a week later I dropped my purse and went to pick it up-- almost did not get back off the ground.
Because the muscle spasms-- and they were nasty this time-- respond to Flexeril, is part of the reason the medical folks think it is just a muscle thing.

Last time I did a number on my back really badly was due to another slight wrong move-- and then sneezing-- I think the whole neighbourhood heard me yelp that time.

Oh and just as an aside -- I read the diet-- no freaking way! I would starve to death. I'd have to be in a LOT more pain that I am now to eat like that. I am a health food nut too-- so I have a very good diet.

I unfortunately have a mostly desk job-- that is inconvenient. Especially when you can't sit for long periods…

Anywhoo-- I live in coastal BC Canada (god's country-- but lately kinda white and cold).

I have two girls, 4 and 2 1/2, a partner and a Pug and a cat.

Hi Again.

Welcome! I hope you don't have AS. I wouldn't put too much stock in the x-rays. My x-rays were negative but still got the diagnosis. I would go to a qualified rheumatologist for a proper diagnosis. There are other arthritic conditions that resemble AS.

Farinelli

Welcome BCgirl,
I hope it all works out for you.. you will find a lot of info here.. and yeah I agree with the diet I don't have that kind of will power and I LOVE FOOD!

Hi,
X- Rays showed fusing, but diagnosis differed form dr. to dr. As a negative tester, I compare all other symptoms and by suing the NSD I see that everything matches. Even all the fibro symptoms.
When I feel like dying, literally, 2 day fast and apple diet pulls me out of the flare. when we hurt bad enough, the diet is really nothing compared to the pain that can come our way.
Nice to meet you.

Just wanted to welcome you to the forum. This is a great place. I have to answer the door. Will write more shortly.

Welcome.
Blessings.
Possi

Yeah my doc says she's gonna have a look at the xrays and then possibly refer to a rheumatologist-- I am gonna push for the referral and she is really good about that kind of thing (I have a great doc).

She has said that she wants to see me when I am in really bad shape-- as I usually come in after the fact-- she is a ferry ride away so I usually go to someone local if I am in bad shape for travelling.

I have only had 3 bad flare ups in the last 5 years-- numerous minor ones though. Bad for me means unable to work for days. If I can suck it up and hobble around-- I go to work. But I have learned to be very very careful… I exercise everyday -- elliptical exerciser, I do my physio stretches every day, have for years and years. I also take care not to do anything stupid-- like-- go snowshoeing (they did it for team day at the office -- I took a pass).

I counted, I have seen 6 different physios and (on desperation) 3 different chiros over the years… I am not a fan of chiros but I lived in Northern BC for a number of years and there was simply no orthopaedic physio around. I'll never live anywhere that isolated from medical services again. I had one chiropractor tell me he could cure me-- given of course I see him something like twice a day for 8 weeks-- I kinda felt like he had his own little cult going on there-- Plus he would have got a lot of my money-- I said no thanks. He wanted to reshape my spine-- according to him it's the wrong shape, he was gonna put a curve in it that is not there-- um yeah no…..

But before I found an ortho physio I lived in pretty much constant lack of mobility-- I worked in early childhood for 10 years during most of that time too. Daycare-- and mostly with kids under 3. That was a bit painful at times. Esp those 40lb 2 year olds who want to be carried.

Now I have a 40lb 4 year old who wants to be carried… She doesn't get that very often.

Hi BCgirl,

Welcome to the forum. I think you should probably get a second opinion from a rheumatologist. Hopefully you don't have it, but they're in a better position to diagnose it than a primary care doctor.

The diet isn't for everyone. I've tried a few times and I can't do it. I just lose a lot of weight, and I'm not a heavy person. If you can do it, though, people do seem to get results from it. Keep us updated on how things go.

Thanks,

Jeff

Yeah me too-- but hopefully if I see a specialist I can possibly get an answer or two. I'm not holding my breath.

The thing about the diet that kinda throws me is that it sounds an awful lot like some of the ones my partner tried in the 90's after her diagnosis of ME (Myalgic Encephalomyelitis) don't ask me if that is spelled right… There were lots of things that were supposed to help or "cure" her. I am very sceptical due to that experience.

I been there done that, we did the Master Cleanse like 15 years before it became trendy again, worried about food combining, food order etc. None of it did a bit of good but made us poorer for the supplements we were supposed to be buying.

Funny thing is my parents are having their own health problems -- they are getting older now-- and are starting to do the crazy things we were doing years ago (ok crazier--) my parents are aging Back To Landers and they are freaking certifiable. But I love them.

But hey-- if it works-- do it I say.

Welcome I just Joined last week. Did you take the HLA-B27 test? Do you get eye inflamations? That's how they diagnosed me with AS. And also I had the Sciatic nerve problem in my back. I couldn't get out of bed at times without screaming.It's tough.I had issues since I was in my 20's now I am in my late 40's. I was diagnosed 5 years ago.
The best thing to do is to find a great Rheumatoligist. You will need a good one. I hope yaou can find some help.
Good luck..
I live in Utah we are in the white too...
Tina

hello,

just wanted to say hi.

i tried the diet, but it didn't seem to make a difference, so either i didn't do it long enough or i don't have AS or.......

but i do LSD due to insulin resistance and it doesn't really make a dent in my musculoskelatal stuff......

i eat a lot of foods good for inflammation, but i've seen no effect.....
ginger, green tea, fruits like blueberries, almonds, fish, fish oil, etc etc

but my blood sugar feels better.

i walk or bike when i can, i used to be able to swim, but now that always seems to screw up one tendon or the other.

and this last year my SI has been almost constantly a problem, whereas for the first 10 years, it would be intermittently bad.

i certainly can relate to the SI, sometimes the "screaming, can't get out of bed to go to the bathroom" thing, sometimes just have to wear an ice pack around, like today. ok if i'm at home or work with a freezer full of icepacks, but it makes going anywhere near impossible.

and the tendons, i could tell you stories of what i've injured by the most mundane of everyday tasks, some of which took 1+ year to heal, one took over 2 years......just not normal, after so many, can't just chalk it up to "bad luck" anymore.

but you find a way to cope......ice, heat, sleeping with pillows tucked here and there, sit on a swopper chair cause it moves around, careful what shoes i wear, etc etc

physiatrists, orthopaedists, PTs, chiros have kept me functional.
4 rheumies and an endocrinologist haven't been able to dx me so far.
but, as they say, "try try again........."

all of this is just my way of saying, i understand.

sue