Thoughts on long term flare?

[jeanniebug]

I guess what I'm in is a very long term flare up. I can't remember the last time I felt good. I have pain meds and am on the Elavil, Elmiron, been through DMSO and am trying hydrodistention (with a biopsy) this Friday. I was just wondering how many other of you have had a flare last more than 2 or 3 months? And my frequency is getting much worse these past 2 months. I was reading on these boards about the Oxycontin (sp?) and I'm going to ask my uro about that on my next appointment. Because something that has a "time release" effect might work better? I've decided to start over on my diet..I'm starting out with rice and chicken and working my way up from there. Because I just can't figure out why I've been hurting for so long. I look awful lately-dark circles under my eyes and just look..sick..yuck. I was diagnosed a year ago and guess I just feel frustrated, like I should have a handle on this by now. My uro is talking about sending me to Vanderbilt Hospital in Nashville (a very good hospital where they have more resources) to see if they could help. I applied for disability last month and got some paperwork back today to fill out so they can make my face to face appointment..so at least the ball is rolling on that. :woohoo: I guess I was just wondering how many of you have had long term flare ups and how did/do you cope with the pain/frequency/crying spells that come with them? Tomorrow is my birthday and I'm scared to even try some birthday cake. But I know I'm not alone with this and that brings me alot of comfort. Thanks- :grouphug:

[work it]

Let me first say :birthday: to you. I hope that you are able to enjoy your special day. I have never had a flare last that long so I can't help you there..sorry. Have you spoke to your Dr to make sure it's a flare and nothing else? I have had many crying spells and I think it's due to the depresion because of the IC. I look towards my husband at that point to help cheer me up. Good luck with the disablity and please don't get discourged with the long process. I hope you have a great birthday!

[jeanniebug]

Thanks Teisha! Yes I saw my uro last week. They did a urine culture and said it came back clear as a bell..so no infection. Which surprised me because I've had alot of urethra pain lately..it feels like I've been cut there. So I'm just really confused right now. :hmm:

[sacausa]

I have had a flare for over 1yr.... Started with pain meds 1yr ago.... Started with Elmiron 1 month ago... Last year before I was diagnosed.... I was in pain my entire birthday because I love SOUR candy and I was eating it by the handfuls.... great huh?! :headbang:

[sacausa]

Just thought of something... EAT BIRTHDAY CAKE! Just eat it at night so that you only start suffering after midnight and then it's not your birthday anymore so you technically had a great birthday!!! :birthday:

[Sarojini]

:birthday:

I had a flare last that long when I was first diagnosed... I flared for a full 3 months until I finally got a uro to give me a hydro to diagnose me and got on some appropriate meds. Then, again later, due to stress at a horrible job, I flared for about 2 months... I ended up quitting the job to focus on my health, and switching uros. SOOOOO -- I know how you feel, and I know it really stinks :(

I do think you're doing the right things; go back to basics on the diet, keep taking your meds, and definitely go see the specialists at Vanderbilt. I've heard they have an excellent IC clinic there and perhaps they will be able to suggest some things to help out :)

[ICNDonna]

I don't have anything to add, other than to say I hope the hydro will help your symptoms. I know it works for me.

Warm healing thoughts headed your way.

Donna

[catwoman]

So sorry you're having a hard time, I've been fairing since February, I keep a log and how I feel each day, I looked back over my calendar and yes, it's depressing. I have tried about everything, like you I tried the diet, I started taking Elmiron, it's just too expensive and I really didn't feel any better so I quite taking it after 9 months. I have found that Prelief, and the Ice pack are my best friends.

I hope you had a nice birthday. I don't know why the spells last so long either. One day I'm feeling better, then the next day, or that night, boom. :cussing: :cussing: I try and trace back what I ate that day, drank, everything, :loco: I can't find any reasons for my flairs. Today is a 3 day, I number my days from 1 to 5.

Just wanted to say I understand, you feel like your going to go crazy. Hang in there.


Cat woman