Hi everyone. If you haven't heard me whine yet, I'll do it again! Here is the deal: I have not had an AS dx. Tomorrow is my appointment with my rheumy. I have been seeing this guy for almost a year. The trouble is that i had a previous lupus dx, but now it seems to never have been lupus. I had taken some NSAIDs that all gave me rashes, and then triggered a crohn's disease flare before I first saw present rheumy, and for some reason cause and effect is beyond this man. He has been saying my pain was aches from crohn's and was waiting for it to go into remission before he looked at AS. My brother has AS so I have been very pushy about this. Well, the CD is in remission but my AS or whatever has been terrible since I was lowered on prednisone in June. A bone scan a year ago was negative, though an x-ray showed sacrioilitis. Symptoms: butt(SI) pain, grinding and burning. Shoulder pain, burning so bad i actually begged my husband to kill me the other day, and I was serious. Knee pain, etc, etc. Anyhow, tomorrow is the day I find out if he is going to listen to me and my sheaves of info. I am scared to death.
A pain clinic I had set up an appointment with called me today to move my appointment and told me that my GP had said I had fibromyalgia. No one has ever told me this, and I think it is hooey. I know fms is very painful for those who have it but I know this is not it! I don't feel like I have the flu. If this is what the flu felt like people would treat the flu like it were the bubonic plague! Vicodin hardly touches this pain!
Oh, I am sorry I make everything so long. I just need some encouragement, I guess. I am so scared and I almost did something to myself after I found out that people had given me a fms dx, especially since I don't have fms symptoms and no one ever told me about the dx! I know that sounds irrational but I have been sick for 12 years and have endured so much doctor crap that I just don't know how much more I can take. I want to give up. If I weren't married to such a sweet guy I don't think I'd try anymore.
Thank you, Cheryl, for all the info. I have highlighted all the things I have and on that one criteria that has a point systmem, 6 being a spondyloatthropy, I had 10 or 11. I'd like to hear his explaination of why he told me in June I didn't have a spondlyoathropy!
Oh, I am so scared!!!!! There aren't many rheumys in Kansas so I don't know where to go if this fails. This pain can't be endured for the months it takes to get in to a new specialist. How did you all make it until they found out what was wrong with you, especially you womenfolk who were also probably treated as though you were just hysterical females? Isn't funny how we go on about how much medicine has advanced since the Victorian times when in fact the attitudes are just the same. only the tools have changed.
Any hugs or reasons for living are very welcome and I promise to try not to be so melodramatic in the future, especially if it turned out I worried for nothing.
--Heather the Fearful

Heather I was just a child 13 or so when the pain was so bad just hitting a small dio in the road while riding in a car would make me screech from the pain. Doc's said it was all inmy head and I was crying for attention. I don't know how I or anyone else makes it through the brutal days of pain BUT we do make it through. On the other side is different and new pain and in my case areal funny walk but I love mydays and nights on this planet most of the time.
On the days where things look bleak , try doing what I do. Do something evil or absolutely diablolical to a total stranger it always cheers me up.


stevec-they also serve who stand and wait

Sounds like what I went through when I had horrible back pain for years and years and doctor after doctor told me this and that and some even said fibro crap. It wasen't until my spine was almost totally fused that they finially figured out that I had a SEVERE case of AS. Continued bouts of Iritis may have given them a clue. I tell you this, I wanted to die I was in so much pain and for years I could not get an answer for what was wrong with me. I actually went into severe depression for two years. The darkest Two year period of my life. One doctor even told me my back pain was caused by going from air conditioning into the hot Florida heat many times during the day. I wanted to slap the jerk for such a stupid comment. I don't know what was worse the AS pain or the pain I got from all of the worthless doctors I had. I finially found an excellent doctor and I have been under HER care for over ten years now. Thank God I found her, she was the one who told me I had AS.

Heather,

I understand, and I'm sorry you are just another hysterical female. There are a lot of us here, and a few hysterical males, too. The pain is atrocious, and, no, Vicodin does not hardly take the edge off. It makes me high and I just float around in a sea of pain. hahaha. I had the positive B27 test in '97 after my first iritis flair, but was not officially dx'ed with AS until May of this year. And I've had this crap since at least 1972! So someday girl, you will be recognized as having a legitimate disease. In the meantime, come and whine whenever you want. I'm sending you cyber hugs this minute {{{{Heather}}}}. Now, do you feel any better?

If you can't get your rheumy to listen, you really need to find a new one. I'm not from your area of the country, so I can't advise you there. An aquaintance of mine told of her friend who could not get a dx for her unexplained pain, and was told to see a shrink; she then kicked the dr in a choice spot, and proceeded to tell him his pain was all in his head. Probably not very good advice, but if you've tried everything else.........

Love,



Cindy

I took a course in deviant behavior way back in my college days and we all had an assignment, do something deviant. I elected the elevator freak out, you walk into an elevator and don't turn around, just face the back. Amazing how upset it makes your fellow elevator riders

Cheryl

All dogs really need to feel happy is people around who love them

Oh, I do know what you're going through! I was misdiagnosed with RA because the damage they could see, my swollen left ankle, finally convinced a rheumy that something was wrong. But then because it was only one joint I was still treated as a whiner, and no one paid any attention when I kept complaining about my back! Sacroilitis is not a symtom of fibro, it's a symptom of AS, so be firm, take your questions/concerns, that stuff about the criteria with you, and if your rheumy still drags his feet, find the nearest teaching hospital (with a good rep) and see if you can be seen there. No one should have to go through what so many of us do just to get a DX!

The other thing is that some of the meds, the DMARDS, which can be more effective than the NSAIDS without ruining our innards, are not prescribed for fibro, at least to my knowledge, so that's another reason to get a decent DX. And don't even think about jumping off the nearest bridge! You've got work to do, and we'll help you do it, we've got to KickAS - - or kick a few medical ones.

Cheryl

All dogs really need to feel happy is people around who love them

My kid brother , with perhaps a little prompting from me, would cross a busy intersection in the city and I would knock his cap off in front of the first driver waiting for the light to turn green. He would bend down out of sight to pick up the cap and then crouch as he ran out of the intersection so the driver would still think he was bent in front of the car. Childish but great fun when your teens and seriously warped. Can't count the number of thimes the driver would get out while folks behind him are honking in a tizzy to get moving.


stevec-they also serve who stand and wait

Heather please don't be scared. There are a lot of people here who will listen and a lot of people who care. Don't worry about writing mile long whiny letters. How else are we going to know what is going on? I have also been down the depression road and it was a hard climb back up but it is possible. Hang on to your dear sweet husband whenever you need to. I'm sure he wishes he could make it all go away for you. My husband is happy when I lay down with my head in his lap or ask him to massage my shoulders because he feels that he is do something to ease my pain. And he appreciates it when I whine to him because he knows it makes me feel better, at least emotionally. I wish I could climb through the screen and hug you in person but I can't, so this will just have to do (((((((((Heather))))))))))). We will ALL get through this together.

Sending hugs and smiles your way today. Good luck with the doc and let us know what happens. :-)
Christina

Hi Heather,
I agree with alot that Christina, Cheryl and the others said...Ok...Steve too, although he's a nut, but laughter is sometimes the best medicine.
Don't know where alot of us would be without him.
Anway, your story sounds very familiar. We have been through it all and yes, it's hard for us woman especially because alot of docs still believe that woman don't get AS and if they do it's not that bad. That's a a bunch of balony as we all know. The Line I hated the most was "Could you be depressed?" Uggg I hated that. I would respond by saying "If I am depressed it's because I'm in constant pain and your ignorance and lack of trying to figure what the heck is wrong with me is making me that way"
People who know me knows it takes alot for me to get depressed but dealing with what you are now is enough to make anyone crazy.
Just don't give up...keep plugging away and searching for a new doctor until you find one that suits you and really listens.
I too was first diagnosed with Lupus..the doc watched me carefully after that and then came to the conclusion that it was AS instead.
Whine, scream and cry as much as you want. That's what we're here for.
We'll help you with info and support the best we can.
You'll get through all of this..especially with the wonderful people here helping you. We all understand what your going through. When I first arrived here I was scared, confused, and a big pain in the AS, but thanks to all my friends here, I'm back to being a happy, easy going, fun loving Pain in the AS.
Don't get me wrong...it's still a tough road and I still whine sometimes, but being here has made it so much easier. I'm sure everyone will agree with me.
I wish you the best tomorrow...keep us posted.
Hugs,
Lisa

Hi Heather....

Believe it or not..just this morning I wondered why you have not been around........

Now about your post....this is the second time I have heard you talk about doing something to yourself.....you need to toss that thinking out the window....

I know that fear can be debilitating....I was once full of that same fear....but whether it is FM or AS...you are in for a life of pain....but look around this website...look at the people here who deal with the same thing everyday...they still have wives, husbands, children and grandchildren...there is so much of life to live still.

I thought seriously about getting in professional counseling before I found this website...I spend so much time here...and you know what...I don't feel I need the counseling anymore....with people like Cheryl, Sue, SteveC, DameCheryl, Littlesis, Mark(jumpnj)....the list goes on and on......look at what these people have gone through and yet they come here and make all of us laugh and give us hope....

you are doing the right thing by reaching out here and sharing your fear....because we can all remind you that you will get through this...just like everyone here is doing....

Even with the AS dx....what can doc's do for me?...nothing...it's up to me...do I want to use antianflammatories, or the MTX the Sue and Cheryl are on...do I want to try and keep moving with exercise?....it's all up to me really what I want....with FM...it's the same thing...there is really nothing the docs can do...it's basically a guessing game with which medications are going to work for you....

I am HLA-b27 positive and have tons of inflammation...so I don't need a doctor to confirm what I already know...I think that you know better than they do....just take a deep breath....check out the websites on both FM and AS....find out for yourself which symptoms are the dominant ones.....I don't remember if you are HLA-B27 positive or not?.....either way...Fm, AS, Chrones..Lupus...the bottom line is they are all sisters to each other...if your doctor still cannot break down what is happening to you...it's time for a new doc...

and the biggest thing you can do...is stop crying all alone and keep your fingers on you're keyboard at home....keep talking here....don't sit and worry...I have noticed you haven't been around...you must stay involved so you do not get so desperate...

and I don't know about you're spiritual life....but what works for me..is turning off all noise...and playing quite music and having a talk with God....it never fails...when I take the time to do that...my peace comes back....I am not afraid to admit that I cannot do this on my own...I need to know that God will see me through and I need everyone here to support me during this journey...

I have been exactly where you are at....and I hate to see you there...keep talking to us...o.k.

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

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