Difference between flare and symptom?

[GPat]

I was diagnosed w/IC about two years ago because I had an increase in frequency. That was my only symptom. Up until the end of April I ate and drank everything without any flare. Then I had a UTI and went into a full-blown flare for about a week.

My question is, I feel pretty good but am not sure what a flare is vs. a symptom. For instance, is frequent urination a symptom of IC or associated with a flare? When I had my flare (I am calling it a flare because I was in a lot of pain and had to visit the uro for a lidocaine instill and then went on the diet) in April I attributed it to the UTI/antibiotics and the diet I was on (lots of coffee, chocolate, tomato sauce, packaged and prepared foods):bonk:

So now, I go to the bathroom about 9-11 times a day (which is a lot less than I used to go before changing my diet and taking 300 mg Elmiron a day) but my vulvar area feels achy most days, like someone punched me in the crotch and sometimes my lower back is sore. Is that a flare or just part of IC? It's not unbearable and I feel great otherwise.

I suppose it's different for every individual. What I want to know is, is this my "normal" now?

Thanks to anyone who responds and shares their wisdom and experience with me.

[Rocklandgal]

Hi,
My idea of a flare is this: you feel great or pretty good. Then you eat something that affects you (or some other action that affects you) and you go into severe pain from it that almost seems to come out of nowhere. I'm no doctor, but I have IC and that is what I call a flare. Do most of you agree?
Karen

[Goldfinch]

A flare is generally described (by most here) as a worsening of your symptoms. That means using what you feel like when you are managing your symptoms as best as possible as a baseline.

Flares can vary widely. Some people will eat a problematic food and anywhere between half an hour or 24 hrs feel a worsening of their symptoms. A flare can last an hour or several months. I think most of us come up with our own concept of a flare, but there's no denying that just about everyone with IC has periodic exacerbation of symptoms, whether that's frequency, urgency, or pain of one kind or another.

[BT2008]

Hey GPat,

To me, "symptoms" are those nasty things that we all have to learn to live with on a daily basis by having IC, e.g. for me its bladder pain and frequency. And like K and GF said, "flares" are an increase of these daily symptoms--but I would add that for me a super-bad flare usually includes other things as well.

For example, I am on 24/7 pain meds and have a short-acting pain med for breakthrough pain. On "good days" I never need the short-acting pain med at all, but whenever the pain increases and I do need the extra med, then I consider myself in a "flare."

Likewise, my "normal" frequency is usually around 18 times per day (including every 1 to 2 hours while trying to sleep). But when I am flaring, that can easily increase to 25+ times per day (including every 20-30 minutes while trying to sleep). In fact, now that my bladder pain is under much better control, whenever I notice an increase in my frequency the higher level of pain is usually not far behind. Of course, sometimes the pain comes first and then the frequency, but an increase in both are definite signs of a flare.

Also, whenever my flares get super-bad, up to 9-10+ level pain, then I also have quite a few other "symptoms" as well. For example, pelvic floor throbbing and pain, flank pain, ureter pain, urethral spasms, vaginal spasm pain, and low back pain. Additionally, my IBS (spastic colon) will oftentimes flare as well whenever my IC pain tops out! Then add the complete and total exhaustion from getting little more than 30 minutes of sleep without interruption, and all of these things together become a "super-duper killer flare".

As you will find, we may all share the same disease, but we are all very different. What is "normal" for some of us is only occasional for others--and vice-versa. Plus, there are some here who suffer from other related disorders that others do not.

I keep an extensive daily journal--especially detailed when things were totally out of control back in the fall and winter. By journaling, I was able to "track" my symptoms along side of my food/drink intake, my pain, my frequency, etc. It really helped a lot in figuring out what had led up to a flare and my scribbled notes were later compiled to see what was going on while I was in 9-10+ total agony.

I hope you are able to figure out your own IC puzzle sooner rather than later. As soon as I did, I felt much more empowered about how to avoid flares and how to deal with them when they came along anyway (and sometimes my IC will flare even when I am doing everything right). Plus, journaling has helped tremendously in having ready information for my docs and any others who need exact details about my condition.

Take care,
~Beth

[nikki0522]

I agree with Rockland gal, my flares come out of nowhere. But they are usually caused because I probably ate something with tomato's or tomato's paste and didnt know. Or if I stress to much in a day (which is hard when your in school full time with your husband deployed at war lol) But I usually never wake up in a flare it usually happens towards the end of the day or night.

Nikki

[klite]

Hi GPat,

Before I knew that what I was suffering from was IC and found this awesome support network, I would describe my flares as pain with "that pee feeling." As a woman pushing 30, I felt ridiculous saying that to my partner (although to his credit, he was always understanding).

I agree with rocklandgal's description of a flare -- that's pretty much how I think of/experience it.

And can I just say that I loved your description of pain as "like someone punched me in the crotch " -- I hear you on that one!