Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What part of AS is the worst for you?

i think for me it's this really deep down, "gnawing" sort of pain in my low back that rarely goes away....it's enough to drive me insane, and to tears, sometimes.

also what drives me crazy: not having the definitive diagnosis of AS. i have all the signs/symptoms, but the MDs have not seen evidence of it on my xrays or MRI (although two chiropractors have seen it)....so getting the proper treatment hasn't been easy.

injuring so many of my body parts and not ever having them heal up.

alohaben:

that's exactly what i feel like sometimes...

sue

deanne,

i think another way to answer the question for me is,
the hardest thing is "whatever i'm dealing with at the moment",
so whichever pain i have at the moment is the hardest one to deal with.

as for the frustration of lack of diagnosis, i fluctuate on that one,
since i can't stay frustrated for 10 years straight,
i fluctuate between, "my physiatrist is right, we can treat the symptoms and heal me up, even if we don't know the cause" to "i can't believe its been 10 years and they're still clueless" to "well, i'll show them, i'll get so bad, it will be so obvious, they'll have to give me the proper diagnose" to "i'm tired of working so hard at this, i think i'm just gonna forget about being diagnosed for awhile"...i am going to try again for a proper diagnosis once i have all of my newly found data organized....thanks everyone for helping me to build my case

sue

For me, it depends on the day. It started with lower back & gluts. After MVA, it was neck/shoulder (that may have been just MVA, though). Then after a year of bed rest, I was okayed to go back to normal living, and I tried to jog, but the lower back spasms were insane. Couldn't jog. It was no longer just lower back, it was also middle back & still the neck and right shoulder. Today it is neck and right shoulder (front along collar bone, top, and behind shoulder blade and back to spine) and mid/lower back.
Thanks again, Sue, for finding this thread. Interesting read for me.
Trace

Well for me it is all of it wrapped up in one big package. the pain, fatigue, stiffness, inflammation, eyes, etc, etc. This is not all, but the side affects from the medication. Twice I got real mad and stopped (the correct way) all of my meds and that wasn't a very good idea. Could have just shot myself in the foot, if you know what I mean...
I have thought alot about it and the answer I came up with is I want to feel like ME! Not the me now, but the old ME. I am just like everyone on this site and would do anything to feel like ME again. Some days I just don't know what to do, but there is always tomorrow and the next day.

Tom

FATIGUE?!?!?? and here I thought that was because I had 5 little ones running around! LOL! Great, now I can blame AS!!

Seriously, I've gotten my fatigue to a very tolerable level right now. 6 years ago I'd fall instantly asleep as soon as I sat on the couch.... even while babysitting: my neighbor's kids & mine would be playing loudly & I'd not wake up!!

Now I can easily take a little snooze and feel ok... sometimes I end up getting severely tired after a little snooze & would get like I'm on flexeril or something for a couple hours.... but I guess those are the days I need the rest. Fatige is not a biggie for me since I've changed my eating.

for me the worst, right now, is the neck & thorasic & hip & pelvic pain..... headaches are no fun. can't do my 'fun' stuff of crafting/sewing/computer work with a cranky thorasic. shopping is no fun with a bum hip.... gee, just thinking about doing things puts me in pain!!!

oh, the joys of life....

maybe the worst part is not having the active life I dreamed of having with my kids.... I do whast I gosta do and try to smile!

The worst for me.....well, the best for me would be one day of no pain, energy and being able to run in the sun and feel the wind in my hair, pick wildflowers and play play play with my family and then be able to lay down and rest.

I have that dream lots of times.

Good dream.
Possi

The worst for me is the usual things that most of us deal with.. the pain (especially lowback/SI joints, both hips), the fatigue.. the biggest downer is the fact that life has slowed down for me.. had to quit my job, can't do whatever I want when I want and my poor husband deals with this as well.. it's put our life in a much slower version of ourselves, but at least it's made us stronger together rather than the opposite and for that I'm grateful..

When everything started my low back and hips were the worst for me and while I still deal with those pains I think the worse now is from the thoracic spine and ribs, my shoulder blades up to my neck at the base of the skull. The muscles at the shoulder blades up stay as hard as a rock because they are so tight. The cramps around the ribcage run a close second place and then my neck I get ridges across it the size of a finger when I move my head it feels like a small explosion shooting electrical shocks down my arms and back.