Questions about pain control

[RebeccaF]

My question is this, I have been having chronic pain now for 2 years in varying degrees. It has become pretty intense since this past summer. I have had to go to the ER for pain control about once a week since June. My urologist does not seem to have even an idea about what is causing it and as he has told me he really doesn't care to deal with it so I am supposed to be getting a referral to pain management clinic. I have had over 500 stones, 3 percs and more procedures than I can count. I would just like to know in general some things that could be the source of the pain so I would know possibly what direction to push my doctor in to possibly find the cause. Also, at what point does an intra-thecal pain pump become an option? Any help or ideas would be greatly appreciated.

Thanks!
Rebecca F.

[DAVIDGOLDFARB]

Hard question. We had a terrific talk by Michel DuBois at the ICF Symposium this summer. He is a pain management specialist. Eventually Matt will have the talks on DVD and this will be worth hearing. We all agree that there are patients with pain that is not caused by obstructing stones and it is a frustrating situation, not easy to deal with. I think most of us believe that with all that your kidneys have been through, it is not that surprising to have pain; but many urologists would not believe this easily and would not know waht to do about it. I have occasionally seen someone whose pain had nothing to do with kidneys (like all the back pain we have; MR of lower spine sometimes useful). But that's not to take away attention from the kidneys. I'm not sure about intrathecal pain management or other options and I completely sympathize with this situation.

[RebeccaF]

Thanks so much for your answer - it helps to know that there are others out there experiencing this same thing and that it is not "all in my head". My heart goes out to anyone who has to deal with the regular "stone pain" and then have this on top of it. I will say that I have been looked at like I was crazy and have had one doctor who thought I was drug seeking, even though he didn't come right out and say that. Some advice I have though is to inform yourself as much as you can about this disease. For the one doctor who didn't believe I have had 50 others who did and have helped me tremendously based on my knowledge of cystinuria.
Thanks again!
Rebecca