Confused about Flaring

[Jessalyn]

Hi all!

I am new to IC and I have been having symptoms pretty constantly since the beginning of August (frequency and specifically pain in the urethra/lower bladder). Anyways is this a four month flare? Or is this what it will be like forever and then I can expect some flares to come which are much worse? What is it like ti have IC when you are not in a flare? Is it normal for a flare to be so long? Please any info would be great thanks!

[ICNDonna]

What kinds of treatments have you tried? Are you on an IC diet?

Most people with IC do find treatments that keep them comfortable most of the time. I do very well as long as I avoid my food triggers and continue my treatments.

Warm healing thoughts,
Donna

[Annie2]

I had the same question when this whole thing began for me. I couldn't figure out what a flare was or if what I was experiencing was one big long flare. Would I feel so bad for the rest of my life and then have to deal with flares on top of that?

Once I had been on the diet for awhile, my bladder calmed down and my symptoms decreased. I realized this was what I now call my "baseline" state. I wasn't without symptoms but was a heck of a lot better than in the beginning. When my symptoms increase beyond this level because I eat something I shouldn't have, am under a lot of stress, etc., then I am in a flare. When the symptoms decrease again to my "baseline" state, the flare is over. Now I realize that whole beginning period before I began the diet, was DXed and began treatment was actually my 1st big, long and nasty flare.

We often say to newbies that we think the period before DX is the most difficult. Besides the fear and anxiety caused by what is happening to you, many are in a constant flare. Once you learn about the disease, get yourself on the diet and begin finding what meds and treatments work for you, things get so much better and you really do notice right away if you go into a flare.

Hang in there! Most of us find better days do arrive after that initial really horrible period.

Annie

[Katrina]

I think Annie described that well. When I was first diagnosed I was in the worse pain of my life verying a bit from day to day but improved a lot in time. What I consider a flare is when we are much worse than are norm. Although I will also call some things slight flares. Many women get a large ammount of extra pain from hormonal fluxuations which is why even before I got somewhat better I was still having flares months....Good luck!

[ibtracy]

I hate to be negative, however, I am one of those few that suffer from chronic, severe, everyday pain :headbang: and when I flare it's much worse than what my normal pain is. I do suggest doing a food diary to discover your trigger foods and looking into rescue therapies like bladder instillations such as Elmiron, Heparin & Lidocaine or Heparin & Marcaine. My urologist says these treatment can done as often as 3x per day which would require you to learn to self cath to do the treatments. Are you on oral Elmiron? That as well seems to help symptoms if you can tolerate the side effects some people suffer from the drug. I'm lucky, the Elmiron is helping me :) and I only had a few minor side effects when I first began and have been on it since March of 2004. Do you have a good physician or urologist monitoring your IC and your symptoms? You need to talk to this person and let them know the pain that your're suffering from and see what they suggest. I do a daily journal of pain, medications taken, treatments used and a voiding diary every day and that's been helping my urologist and m.d. greatly to treat my pain and symptoms.

You also need to follow the IC diet - it does help. :hmm: If you're looking for a good resource book, check into the ICN shop for the book called the IC Survival Guide - (for me it's my bible for IC & refer to it sometimes daily for answers to various IC questions) it offers alot of information on bladder instillations, various procedures, trigger food lists, etc. It's worth the money to buy it. I know alot of us IC-ers that have been around a while refer to it alot. You could always try your local library as well for the book.

Tracy K.

[Sarojini]

I think you've gotten some good info here; I deal with chronic, everyday pain; HOWEVER it is better than when I was first diagnosed and I hope it continues to improve! I think most people seem to start off with what seems like a flare that lasts months and months, but then they're diagnosed and begin various treatments, and slowly things begin to improve. Don't forget, meds like Elmiron can take 6-12 months to work really well, so you need to make sure you have acceptable options for pain control during the "waiting period." Talk to your doctor if you are really feeling bad... perhaps there's another med or something he can add to help you feel better.

I think what you'll notice is you'll start having more and more good days, and the "flare periods" will become further and further apart until you feel normal most of the time. That is generally the progression of things that I've seen by watching these boards over the last few months, and I hope that's what happens for you :)

Good luck :grouphug: