Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club 27yo with AS in Auckland New Zealand

I thought I'd introduce myself!

I used to be a hardcore runner (won junior titles in athletics) and triathlete (had done several Ironmans, and was already entered in the next year's Ironman too).

Went from: this is weird, an injury! Can't be running related??? Never had that before! (seriously, I was the perfect running machine, never ever injured seriously. Not even once)

To: damn, this is being a real pain the ass (literally!) as it *still* here!

To then: oh crap... this is going to last a while, but fingers crossed it will eventually go away. (as surely this is just some random one off? Right??)

But then: girl friend can't put up with the screaming at night I make from the constant pain (not to mention during the day, when I can't even get up in the morning without her lifting me up) so she drags me off to hospital (against my wishes!! I'm a bit of hard nut like this).

So then: lots of different doctors, all very quizzical (they engage in a little game of "pass the potato" too, as they examine me then determine I fit in some other specialist's field so pass me along...).

Then anyway: put on bed rest and I get pumped up with drugs, which seem to help eventually...

Then at last: yay, is gone! I can start jogging again! ("sort of" jogging, still got little niggles which are gradually going away...) Even did one 5km race in an ok but average time of 22 minutes (was actually my first run ever after this started, not bad for the first hit out I suppose even though went though hell in the amount of pain it dished out to me)

Some weeks later: WTF WTF WTF!! Not again... it is back :-( Back I go on the lethal cocktail of meds as prescribed by the doctor and being a coach potato (no exercise for me! boo hoo).

After two years: yikes, I've got to deal with this for THE REST OF MY LIFE?!?!

Later on: but why the hell don't they still know WHAT IS IT!

Four years after the start of this nonsense and we reach what happened YESTERDAY: which is when I got told by a specialist at the hospital I've got ankylosing spondylitis :-( Oh well... I suppose it is good at last to know what it is and have a specific name for it.

Welcome Ironman!

Wow! You have had it rough! So sorry you had to join the AS club

Like you, I had a long journey before I got the diagnosis. I was glad I finally had a name for the pain because no one believed I was in pain. Once it had a name, people started to believe me.

Have they started any kind of treatment for the AS yet?
There is a ton of info on this site (and other sites) about AS. Also about alternative treatments instead of drugs.

From my experience, doctors don't know a ton about this disease, so it is very helpful to learn as much as you can.

Welcome Ironman. Sorry you're one of us, but so happy for you that you finally have a name for your pain. Most of us have known the frustration of not knowing. It's no fun.

Hi and welcome Ironman. I'm way over the age limit for this particular forum but just had to say hi to a fellow Kiwi!

Great to find another Kiwi!

Only seen two kiwis so far with AS, my birth father and a good friend of mine who got me onto my no carb diet.



NSAIDs has been the primary method they've been using on me for the past four years.

Although also had steroids and methotrexate, along with probably heaps more I can't remember right now.

After my diagnose last Wednesday of AS the specialist wanted to put me back on methotrexate again, but I resisted as I'm quite against taking drugs unless I have to :-s

And I think/hope I can survive a little longer without trying methotrexate.



Indeed, my friend who has AS has been "cured" for the last decade due to sticking to a strict no carb diet.

I'm trying it out myself, and so far so good! In at least I'm seeing some benefits which allows me to cut back my medication that I need.

Also right now I'm trying a short fast, currently just finished day three of it.




I fully agree, more we learn the better!

Thus you'll love what I posted here:

http://forums.spondylitis.org/ubbthreads...2992#Post232992
(I've signed up, as it is FREE! Is delivered entirely online too, so even I in New Zealand can do it!)

https://www.coursera.org/course/pharm101

Fundamentals of Pharmacology
(by Emma Meagher, MD)

In this class you will learn how drugs affect the body, how they alter disease processes and how they might produce toxicity. We will discuss how new drugs are tested and developed prior to them being used for patient care. We will describe how personalization of medicine will become a common day reality in patient care.

Dr. Emma Meagher graduated summa cum laude with her medical degree from the Royal College of Surgeons in Dublin, Ireland. Following completion of an internship and residency in internal medicine, she was appointed as Senior Registrar /Lecturer of Cardiovascular Medicine at Mater Hospital, University College in Dublin, Ireland. She is currently working as an attending physician in preventive cardiology at Penn Medicine.

You may also find these interesting:
https://www.coursera.org/course/genomescience
https://www.coursera.org/course/soc101
https://www.coursera.org/course/neurobehavior
https://www.coursera.org/course/healthpolicy