anyone here like me?

[AmyToo]

I just want to cry.  I have Loin Pain Hematuria Syndrome.  Never heard of it?  No wonder, as there are less than 500 of us sufferers out there.  Basically feels as though I'm passing a kidney stone nearly all the time.  I'm also a rampant stone former.  I lost 1/2 of my left kidney to stone damage two years ago,  and had my right kidney de-nervated and moved into my pelvis last year.  the cannot do that to the left side as that kidney is so scarred down  the chance of losing it is too great.

I've been referred to pain management, had my first appt, felt like a criminal filling out pages of things swearing to not sell the meds i might get,  not to take more than prescribed, agree to random blood tests to verify the medication level  and pee in a cup at each visit to verify i'm not taking something i shouldn't.  this pain guy works with my nephrologist closely,  has seen lots of his patients with this problem,  so that is why i'm going to him.  

But we are few and far between,  most of his patients are back pain sufferers.  i just feel alone.  i don't even tell anyone when i'm hurting anymore, i'm sure thry are sick of it.  oh and did i mention i'm 6 months post partum?  my baby was 14 weeks premature,  i was in preterm labor for weeks because we could not keep my pain managed,  my womb was shifted to the left, i was totally lopsided and he was compressing my left kidney.  he is doing well now,  hopefully be off oxygen in a few weeks.  holding him now  so sorry for the typos, doing this all one handed.

are all pain management clinics like that?

[Mollyrae]

Hi Amy:

I have started a new group called "The Chronic Pain Couch"...you might be interested in joining or just poping in from time to time. It's a great discussion forum for CP sufferers like you and I. Hope to see you there :)

Mollyrae

[peaceinknowing]

If you feel like this is going to be an issue for you with the pain pills, then my best bet for you would to go to your PM doctor and be completely honest. They monitor their patients for a reason, trust me. Not saying that you're an addict or anything else, but just know that I have been down this same road that you're on right now. I don't have the CP issue that you have, but I do suffer from CP and am using OTC medications to supplement some sort of relief.

[Tuckamore]

Hi Again Amy,

I have heard that many pain clinic are as you described. Initially they are tough and you must build a relationship with them like you would any other physician. There are so many drug seekers out there that I'm sure the PM Clinics have been burned a few times.

Many of us CP sufferers have been treated like a criminal drug seeker a time or two or even more often that a few times. It's part of the journey through CP and you have to be a bit thick skinned some times. If his attitude does not chnage or you are not comfortable with him than you can always find another PMP.

Hang in there. We know how difficult it can be to deal with CP.

Take Care,
Tuck