Gerri
I am so sorry to hear what you are going thru. I have come to the conclusion that those of us with AS are thought to be hypocondreacts by doctors. I think there is so much they don't know about AS and other health issuses that come with it. sometimes I am like you I feel like just giving up but please don't do that. I know all to well what it is like to go to the docs and they tell me since they cannot find a cause for what is causing me pain that there is nothing they can do. I have found that the younger docs are the best to go to because they have not gotten into a cycle of seeing and treating the same things and they seem to think outside the box more.

Does your insurance make you have to get a referral to specialist? My insurance allows me to go to whoever I want.

What medications are you on for all of your pain?
Are you on enbrel or any of those medications? Some of your symptoms sounds like you are on some sort of steroid with the Bladder problems (severe fluid retention, fluid hesitation), Hands and faces visibly swollen. You said that this was from your family doc but do you have a rheumy? Your burning sounds more like nerve problem. I have burning feet and legs and was told it was neurophothy. I don't take anything for it cause the meds that they had put me on made me suicidal so I just have learned how to deal with the pain as much as possible. I take loritab however its not for the neuropothy because it does not help nerve pain at all. I use the loritab for my AS.

You said your ESR was elevated.. What is it elevated to? I have learned that the ESR in AS patients can be not very reliable becasue it is a number for the over all body not just in different areas of the body. I am sure some else could expain it a lot better than I can and you may already know that becasue you always seem to be on top of all of this stuff..


You said Bruises on my arms that just pop out...I have read that people with HLA-B27 gene bruise very easy. Are you HLA-B27?
I am having the same problem with pain after I eat anything. I am having a ct scan on Tuesday.

Please know that there are a lot of us in the same boat and we can be supportive of eachother and know you are not alone. I will be praying for you.

BIG HUGS
Raquel