Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Upset, confused, ready to give up.

Rheumy #4 had his nurse call me today. I am neg and my sed rate was 29. He didn't listen to a word I said when I saw him Thursday. That is the most frustrating part. I have been diagnosed with RA for 4 1/2 years & AS for almost 3 years by 2 other rhemys. Now he just undiagnoises me? The nurse tells me that my MRI (from early Sep) shows slight OA. What?! I have severe femoral acetabular impingement symdrome. I was supposed to have reconstructive surgery or replacement in June. My immune system has made me too unstable to have it.
So you would think the rheumy is blowing me off because he thinks I'm looking for pain meds. My ortho team has me on a pain patch for FAIS & spondylolisthesis. I think he jjust doesn't want to treat me. I can't go back to rheumy #3 because she nearly killed me with steroids . I can't just keep going to different doctors. Rheumy #1 said my shoulder pain was endometreosis. She also dxed me with fibro & didn't bother to even tellw me. #2 has an awful office staff & he barely speaks English.
I am at my whits end. I've had pubic bone pain that hurts to the touch for 12 months now. I've had killer back pain for 4 months now. I wake up 2 & 3 times a night in severe, wrenching pain. Like my spine is frozen. I have roll into the fetal position to relieve the pain. Sometimes i have to get out of bed. I told rheumy #4 that on Thursday and he said, "well, the As patients I've heard of have to get out of bed & walk around." How is that different from what I said?
I am so ready to give up & never see another doctor. In the mean time, my life is falling apart. Pain consumes everything I do. My husband & 3 kids just don't understand what I'm going through. Theynthinkmthat doctors fix everything. Doctors are my biggest enemy right now.

WELCOME, JenBeth28:



If You were HLA B27 negative, I would have it retested using more accurate technique; the above symptoms are CLASSIC AS.

So true about doctors--and You will not find even one--in Your location--who can explain AS to You! That fact is regrettable, but we are our best advocates and best physicians; I long ago began taking sole responsibility for my own health...and (literally) better today for it!

You have come to the right place now; please check out my signature "Important AS Resources" for other symptoms (diagnostic help). There IS a way out--fortunately, doctors are not the end of the road, but only the beginning!

HEALTH,
John

Not PC to say, but "OMG - stoopid jerk!!!" he needs a first-hand experience of AS pain to know how and what our body tells us to do to relieve the pain .

*This* AS patient used to get out of bed in agony in the middle of the night and walk around the bathroom, twisting my arms like a washing machine to loosen up my middle back and ribs, do some general stretching on the floor, but BY FAR the best thing to relieve the pain in my sacroiliac joints was to sit on the toilet and drop right forward so my nose was between my knees and my arms drooped forward onto the ground - stretching the long ligaments of my back and opening out my SIJs (because my legs were wide apart..) The bonus is that one of my cats usually arrives and gets lots of rubs and pats whilst I'm spending quality time slumped forward on the loo with my hands available at ground level.... (no cat avatar available...)

Does this last manoeuvre sound similar to the foetal position??? You might like to try this one, if your acetabular impingement will allow that amount of hip capsule compression...

Rarely need to do that anymore as I found this wonderful site, took the leap of faith and started the No Starch Diet - that was nigh on 5 years ago and now I am in much better shape. Sadly I haven't avoided 30 years of collateral damage - so I have significant amounts of degeneration in my spine, but that's another story.

head to the diet forum and see if YOU can RESCUE YOURSELF!

Hmmm, now what could that possibly be??????? Oh yeah - the PUBIC SYMPHISIS - the Yin to the Sacroiliac joints' Yang - would that make logical sense to anybody who had a post graduate training in rheumatology ??? - one would hope so, but in reality, it seems as if you have encountered YET ANOTHER medico who has a functional listening loss. There is such a BIG difference between hearing and listening....

Thank you so much John & Louise! It is so comforting to hear from people that understand. Louise, the pain is not in my pubic symphysis. It is from my sitting bones, the inferior pubic ramus. I suspect that it has to do with the sacrotuberous ligament that goes from the ischial tuberosity to the sacrum. My physical pain ortho agrees. Didn't even get to that with the rheumy.
The rheumy didn't even check my fingers. All of the others ones always checked my fingers. Both middle fingers, both thumbs & my right pointer finger hurt any time I bend them. They are not swollen or red though. They burn when I flare, oh how it burns. Meds can't touch the pain. I ice til I go numb, for as long as it takes. Oh, I am Face 965 on Faces of AS!!
I am at a crossroad, seek another rheumy, which looks bad on me, or give up. I know that giving up is bad, really not good for my health. But I am lost. So lost.

Don't feel bad changing doctors; it took me several rheumies before I started getting the help I need, and this one is so wonderful, worth all those changes.

Ah, the sitz bone pain, yep, I know it well! Occasionally I had to sit on ice packs with it, but mine was mostly manageable. My friend has to carry a cushion with her every where she goes and sit on that due to the "sitz bone area inflammation". She called it her "tuffet". Tuffet, ice, whatever it takes.

Good to meet you

I'm sorry you have to deal with this. I too am so frustrated with drs. I have wanted to just quit seeing them so many times. However, I want to prevent joint damage so I deal with them. I do have a good rheumy now, even though he is presently not returning my call...Just keep looking for a dr. who is more good than bad, do your own research so you don't get dangerous treatment, and try to get on their good side. It sucks, I know. *HUG*

Hello JenBerth,

Hope you can find some answers to the pain and a doctor to help you out with your issues.

I cannot diagnose it as AS, but many symptoms should very familiar. When AS struck me.. the several doctors I saw in my local community discarded AS... not until got referral to rheumy did I get diagnosis, but took over year to convince doctors I thought I had AS and to get referral (I came back HLA B27 positive).

Take care,

Tim

Thanks everyone! The encouragement I have found here has sent me searching for a new rheumy. I know my last 1 will take me seriously & treat me but her practice is under investigation. There are just not any reputable rheumys in Memphis :o(