Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group very scared (long)

Hey Lisa....that was the one that got to me too....the doc's said ...are you under a lot of stress??....stress?...YES...because I feel so much FRICKEN pain and you can't tell me where it's coming from...I fell sick...I'm exhausted all the time....can I slap them across the face pleeeassee???

Sending "Lovie Dovies" you're way!
....Debbie

Heather.

Dont give up, it is normal to get depressed when your ill and in pain.
Remember every person on this site has been depressed at one time or another. You keep going to the Doc until you get the answer your seeking. I went over 10 years without a Dx.
Remember people with As have what my Doctor calls and invisible disibilty at least until the damage is done and noticeable, and sure lots of healthy people think its in our heads, but have you ever noticed that when a healthy person strains their back they cry and moan like its the end of the world.
I felt like you back in 85 and i also had black thoughts, but remember you have people who love you, and they would miss you so much.
Come here and come here often as everyperson here will listen to you and try to help , after all we are all suffering. Never feel embarresed to vent because we all do it when we feel theres no hope.
So keep your chin up Heather and good luck with your Doctor Visit.

Rick

Debbie and everyone--
I actually haven't even had an HLA-B27 test. He says that it isn't useful unless you are comparing the data to someone else in the family. I don't know why he won't do it to just shut me up at least. Since my brother has AS (really mild--he only had some trouble when he was about 9 or 10) I'm sure I'm positive for it. I don't know why they'll do all those tests for lupus and RA that are only little parts of the puzzle but won't do this one little part of this puzzle. My sed rate, btw, was 70 when I started seeing him. Now it is down to 8 from Remicade, imuran and prednisone, but I hurt worse now than when it was 70.
If this were fms it wouldn't have gotten better when I was on lots of prednisone, right? I looked up fms and it doesn't sound at all like my pain. Mine seems to be focused in joints, rather than all over, and I don't have any brain fog. Just distractions from pain. I thought I'd read that steriods actually aggravate fms.
Thank you all for helping me out. I'll tell you all how it goes. I have to leave here at 6:30 am tomorrow to get there, ugh. It's an hour and a half drive, so I should be good and stiff and pained by the time I get there!
I got a packet today that I had ordered from SAA that has rheumys interested in AS. Mine isn't on there, of course, but there are three others I can try that are not in offices I have already been to. Maybe one of them would work out better.
--Heather

I think you hit the nail right on the head when you said "If I weren't married to such a sweet guy..." I know, in my case at least, that the reason I go on is for the ones in my life that I care about and who would be hurt by my loss. And I do not eaven have a wife or any romantic interest, for that matter. Still, my mom, my kitties, and my sweet little Pug puppy-dog need me... so I continue on. Although I do admit, that at times, it is difficult... like right now. I'm in so much pain right now that I just about can't stand it. I know you don't want to hear others' problems, right now... but I tell you so you understand that you are not alone... either in you pain or feelings and fears about it.

Feeling like it's me who's being mashed!

Hey Miss Heather!!
Dont you go giving up on us now...I know that it is very difficult to get through a time when you do not have a dx yet..or had one and now is different. I first started showing inflammation about 6 weeks after my 2nd baby....arthritic pain...fatigue....my hands hurt so bad. My PCP was understanding and sent me to my ortho doc. He studied my symptoms and immediately sent me to my rheumy. He said it was common for women to develop an autoimmune disease post partum as the immune system is weak at that time. He feared RA or spondlropathy. My rheumy dx'd me with inflammatory arthritis on the 1st visit. On the 2nd visit he tested for Lyme, and HLAB27. BINGO!! He got it. But he never calls it AS...said it's spondlyropathy...not sure if its AS. Although I have some slight fusion, sacroiltis, TMJ, costochondritis and what not!!
Anyhow..it was very frightening not knowing, but you know what you are feeling, and you are not crazy. WE all know that what you are feeling is real. Keep that in your mind and that strength will emerge. Believe me I went to a fancy rheumy once who said I just had carpal!! I have his carpal right here...in the shape of a knuckle-sandwich!!!
Never fear....the ASkicker's are here for you!! They were here for me during my MRI and CT scan crisis a few months back. With their prayers and support....I made it......unscratched....
we're for you ...don't give up.


Askickin'buggie

Now Heather did you have to go and get my blood pressure up....this is your body...not your doctors...I think it's time that you say "look buck-o"...I WANT TO KNOW IF I AM HLA-B27 POSITIVE!...NOW TAKE MY BLOOD AND GIVE ME AN ANSWER!.... if he doesn't do it...go to a regular GP and he can do it for pete sake!....that's what I did....you really need to know Heather...

Sending "Lovie Dovies" you're way!
....Debbie

I agree with Deb as far as standing up to your doctor and telling him what you need and want, but you have to remember...whether you test positive or negative....this not not determine whether or not you have AS. Alot of us here have AS, but have tested negative for the gene. On the same hand some people can have the gene and never come down with the symptoms of AS. From what your saying about your symptoms though, if you do test postive, then the chances are pretty good that you have AS, but if negative, you can still have it too....something to remember ok.
Take Care,
Lisa