constant flare??

[katie87]

I have been in what I consider a constant "flare". I have been in flare-like pain every day for few years believe it or not. I don't ever "flare" because every day i have pain, there are a few things that do make the daily pain worse like sex and spicy foods or alchohol. But I am in pain every day, is it possible to have a neverending flare? i have throbbing bladder, burning urethra and pelvic pain and pressure 24/7.

[VickiB]

How awful it must be! Even at my worse time with IC my flares only lasted a month or two with at least some kind of break in between. That was enough of a test for my sanity. I can't imagine a flare being constant for years!

is it possible to have a neverending flare?

I am no doctor, but I would guess yes, that could be possible.

I hope 2009 is a year of positive IC change for you!

Vicki

[hdwadman]

I have been experiencing IC symptoms for about 7 months, and there really hasn't been a time without the pain, urgency, and frequency. Some days are worse, but the pain never gets below about a level 5 or so.

[kadi]

For the first two years, while we figured out my treatment plan, every day was bad.
Now I do have mostly "good" & some "flare" days. The meds listed below my name, the IC diet & pelvic floor physical therapy have really improved my health.

What are you doing for treatment?

[bluetou]

I am sorry you are feeling pain all day every day.

I am just wondering are you following the IC diet (it seems as though you are mentioning alcohol, and doing other things that may be causing you to keep flaring) Are you drinking lots of water to keep the urine diluted? getting rest?

Again, I am sorry for your pain I feel for you ((HUGS)).

Peace
Blue
:pray:

[Briza]

I am sorry for your pain. In the beginning I was also in nonstop flare the 1st 18 months to 2yrs. It was no fun so my heart goes out to you ((hugs)). With time, the diet, the right combo of meds, the right drs things finally became manageable. I hope you have some kind of pain management. If not, please look into it.

[TexasHoney]

:grouphug: I am sorry that you are having such a rough time. I hope things get better for you in 2009.:pray:

Hang In There

[katie87]

thanks everyone!!! I follow the IC diet by avoiding the things that bother me most, spicy foods, citrus jiuces, pasta sauce, orange juice, splenda. tomatoes. sodas. I do drink occasionally which i take prelief with, and i only have a certain beer.

i also take the following meds.
elmiron 400mg/day
amitrpiptilyine 40mg/night
gabapentin 400mg
hydroxziyzine 10 mg
tramadol 50 mg PRN ( doesnt help me, never use it anymore)
oxycodone w/ apap5mg 2xday
and a topical baclofen amitriptline combo that i put on my stomach over my bladder 3x/day
pyridium 200mg PRN
tens unit PRN

bladder instills every other week. Some pelvic floor therapy.


any suggestions are welcome. including meds.

[BT2008]

is it possible to have a neverending flare?

Hey Katie,

Yes, I have to assume that this is indeed the case! I was suddenly struck with severe pelvic pain on June 14, 2008 (at 7:05pm), and I have been in pain 24/7 ever since that fateful day. At the time of this writing, I am just shy of 7 months of living with severe IC.

I have yet to have more than a few precious "whole days" where I felt that the pain was even below a moderate level (only about 8 days out of 7 months). Usually the pain stays continuously between levels 5-7, with a "good day" including either no escalation to a higher level, or perhaps a few good hours between levels 3-5. My "bad days," however, which are more often the case than not, my pain levels bounce back and forth between 5-7 and 8-10.

That description is using the normative descriptions for pain, but in the last couple of months I have created a new category of pain: 10-15!

Before being struck with IC, I had my own idea of what a level 10 pain category was: in 1984 I chose natural childbirth for my younger son, and then in the summer of 2000, I had both sides of my lower jaw broken with TMJ surgery--both of which were level 10 for sure!

Having to live with severe IC, however, has changed all of my perceptions of pain. Now I am living in a continuous flare and more often than not (at least several times a month) I live through what I now call "a flare on top of my never-ending flare" (or that "my IC flare is flaring again")!! This is when my pain escalates into this 10-15 level range.

Having to live with moderate pain everyday is bad enough, but having to live through this highest level of pain feels like this IC will surely kill me one day! But--so far, I haven't died! :wink: I keep waking up everyday and start all over again...

Despite my horrible life with IC right now, I still hold out hope that one day the cycle of pain will be broken and I will be able to refer to my "bad days" as "flare days" and the rest of the time live a normal life! Until then, however, I am hanging in there as best as I can!

I am so sorry that you have IC too! It is truly a horrible way to live! Be sure and stay close to this forum though (even when you don't feel like posting). It serves as an understanding "friend" for me everyday (several times a day in fact), and is a very important source of hope for my future.

Take care, and--You Hang In There Too! Okay?
~Beth

[NancyB]

Dear Katie-

I am sorry that you are in so much pain. It must be awful.

Is it possible that you have ulcers inside your bladder that you need to have burned off? Perhaps you need to talk to your uro about that possibility.

Hope this is helpful.

NancyB:)

[leelee88]

I was in pain constantly for the first 17 months after my diagnoses.. I finally found the right combo of meds that has helped get things under control.

I would talk to your Dr about maybe trying a different plan.. Or like someone else mentioned you could have something else going on like ulcers, or you could have endo?

[katie87]

thanks everyone! my uro is starting to suspect there is something "else" besides IC, she referred my to a pelvic pain specialist, i will be possibly having a laproscopic surgery to see "what else is there". they are suspecting endo or "a bowel problem" because my pain has been severe daily for 4 years or so. with the worst of it being the past 2 years. I never once thought i had endo, was anyone else surprised with it?