Thanks all for the responses so far! -This answers a lot of things I have wondered about!

Keep it coming!

I can relate to back spasms and cramps. Right now, my herniated disc seems to be getting worse. The last 2 days I I feel and hear a joint in my lower back cracking by itself when I sit down crouched. Seems the pain gets worse then to. I used to get this only in my upper back

Hi there, hope this helps:

Your pain in the beginning?

Overall back pain started when I was 15. Bad enough that I went to a chiro. Lower back, thoracic and neck (knew how to alleviate occiputal pain by the time I was 18). I'm B27+ by the way.

Where did it hit you first?

SIs, thoracic and neck.

Was there anything in particular that set it off?

Not that I know of.

Did the pains change once you fused?

Not sure. Nothing is completely fused at this point; although I have noticed that the left SI is easing the more fused it becomes. Or maybe the syndesmophytes at L5 and the fusing right SI are distracting me from it.

Wich joint pains were the worst?

Frankly, it depends on the day. Standing up from my desk at the age of 27 and being unable to walk was pretty horrifying. When my SIs are acting up, the lower back burns and if it gets bad enough, the sciatic nerve starts. That's really damned bad. But then, if my thoracics act up, they burn and feel, lately (since I've been eating wheat again) as if they're going to shatter. That's pretty horrible. And the neck hurts all the time, it just varies with no rhyme or reason. Some days not so bad, other days mind numbing. And now, my elbows are starting and my fingers. So, I can't give you one easy answer on that.

Wich are easier to live with?

Depends on the day and where my overall pain levels are. I can't answer that. None of them is easy to live with.

Description of the iliosacral joint pains?

Burning, aching, tightness like and elastic band stretched to the breaking point, my sit bones are going to poke through my butt and tear a hole in the seat beneath me. It's like I'm sitting on a sharp rock, but the sharp rock is my butt. And then the maddening sciatic nerve pain starts and goes down my leg.

I hope that helps gilth.

Warm Hugs,

Not diagnosed,so my answers wont be relevant to most of the questions, but had to answer one of them:

Which is easiest to live with?
None of the pains are easy to live with, and the point at which it becomes "can't live with it" also varies a lot. Sometimes I can keep on going with huge amounts of pain, and other times I fall apart completely at much lower levels of pain. Some of that has to do with duration of it - even very low levels of pain constantly can just completely wear away at my soul, and some of it has to do with mental frustration - when I can't do something I badly want to do and all of a sudden I become incredibly aware of pain levels and can't cope. I can also slightly put pain to the back of my mind if I am focussing on getting through to some point in the future - like right now I know I can't see a rheumatologist till July, and actually I'm finding its almost easier to cope with pain right now than it has been, even though I am taking far more codeine, and wiping out with tiredness easier. I wouldn't be surprised at all if I mentally and physically crash once I have seen the rheumatologist - especially if he can't offer me anything different immediately.

In hindsight I also can't believe how much I went through before I actually even considered I might have something that had a name and could be treated. I knew our family all had "arthritis" and just lived with it, so I did too. Stupid really. If I had gone off to doctors in my teens or 20's I might not be in the position I am now.

Sorry Sue's I can't find it. Lame in my membrane! Can you tell me exactly where to go please?

Hmm...the pains started in SI's with me too. Or at first there was suddenly a problem with my neck if I slept in an even slightly wrong position. Then left side SI wich spread to right too, and lower spine.
Then after months a chiro/naprapat cracked my neck and it set off like crazy.

Jaw has been for years and years but got maddeningly worse after that.

And that blasted stomach infection I got in Egypt...feels like it was the catalyst that sprung it all into high gear.

I have had AS for 25 years now.

Your pain in the beginning?
SI joints and diagnosed as sciatica. Also off and on cases of iritis. no doc connected the two for a long time (no back or small joint pain)

Where did it hit you first?
SI joint and Eyes

Was there anything in particular that set it off?
Yes I had a very bad week with a fever of over 104 and incredibly sick. not too long after that my first irits case occurred and the sciatica

Did the pains change once you fused?
after 25 years of this crap only my right SI joint is fused and yes the sciatica went away once it fused

Wich joint pains were the worst?
Some knee involvement now but I have not really had significant joint involvement

Wich are easier to live with?
N/A

Description of the iliosacral joint pains?
Shooting pains down my leg in the back. could not walk at times

Did you have any peripheral symptoms that stemmed from inflamed spine or actual disc bulging pressing on spinal nerves due to deformation of the spine?
no

Do any of you have neuropathy linked to AS?
no

Have you ever been tested and found to have too low Vitamin D?

yes I supplement at 4,000 IU a day now to stay in the proper range

I have had this diagnoses for 45+ years. Yes! I am old!! Thank Goodness!

I began in my teens with various aches and pains and was diagnosed first with RA. Then came AS and SLE and Fibro, etc. etc.

My worst pain in the beginning was SI joints where I could hardly stand up from a sitting position with muscle spasms so bad around my tailbone. The pain was just like a very bad "charley horse" inside. I had pain that went to my hips, under my buttocks and down the backs of my legs.

It has been down my legs into my feet.

Now I have developed 2 curvatures and have 8 bulging discs and pain from the top of my neck to the bottom of my tailbone.

I had years of Iritis/Uveitis that was only controlled by oral Imuran. The Pred drops only succeeded in giving me early cataracts.

I took Prednisone orally for many years at doses from 60 mg. a day to 100 mg. IVSolumedrol when hospitalized. I have taken every thing from Placquenil, to oral and injected MTX, Imuran, Humira, Remicade and just about every other med there is for these diseases.

What makes me worse is overdoing it. Standing makes me hurt a lot more than walking but I can't walk long. Sitting very long also hurts as well as laying. I am constantly changing positions.

Yes, my Vitamin D was at 7 which is where the count begins according to my dr. The same as "0" with other things. I was taking 50,000 once a week until we got it up some. I am still taking 3200 daily of D3 and calcium.

Prednisone is a tough drug. It added to my problems by affecting my blood sugar, my heart, my intestines, my bones, etc. etc. I am not saying "Don't take it." I think it saved my life at different times. I am just giving input.

I wish you the very best. I am not going to write a longer novel than this one already is.

This may not be what you would have chosen but remember that it is "doable". Support makes all of the difference in the world along with eating right and exercising (water exercise helps me the most).

Blessings.
Possi

Hi Gilth,

Documented my past experience here:-
http://spondylitis.homestead.com/files/index.htm

I used to heavily mine the info, expmt and documented them on that website.
(not updating last few years as I forgot AS).

Regards,
Krishna

Egad, how could I forget the iritis factor!!?? Had my first bout of iritis when I was 18. Again at 28 - for 2 years - again at 38, and again at 42. Haven't had it since starting biologics, thank goodness.

The eyes are a truly bad one!!

Warm hugs,

Your pain in the beginning?
sharp stabbing pain - from age 13, would go on and off over the years.

Where did it hit you first?
The SI region.

Was there anything in particular that set it off?
I did a lot of cycling and that is when I started noticing the pain.

Did the pains change once you fused?
Not fused.

Wich joint pains were the worst?
Hip - makes it very difficult to walk
feet - can make it very painful to walk.
Neck - can make it extremely difficult to concentrate or sleep.

Wich are easier to live with?
Back, ribs, shin etc

Description of the iliosacral joint pains?
Acute stabbing pain early on. Only dull aches(barely noticeable) now.

Did you have any peripheral symptoms that stemmed from inflamed spine or actual disc bulging pressing on spinal nerves due to deformation of the spine?
Not exactly, but peripheral symptoms( numbness and pain) exist due to a large tarlov cyst at S1-S3

Do any of you have neuropathy linked to AS?
Yes, several

Have you ever been tested and found to have too low Vitamin D? -I just had this from a blood test, and all the GP said was with sun and some fruit it should get back up. Is it linked to AS, and how?
No.