What is a Flare?

[shinana]

:angel: Hello to all. I have a questioned? I am newly DX with IC and wondered what the word Flare means. I have had non-stop symptoms for 2 months, some days are worse than others, pelvic pressure and discomfort all the time. The perineal discomfort is often and usually have a :toilet: potty run at least on a good day 20-30x's. Have I been experiencing a Flare for all this time?

[Annie2]

Hi Shinana,

When I first developed IC, I wondered the exact same thing. I'll give you my definition of a flare and hope that others will jump in here and add their own comments.

I think, for many of us when we first develop IC, the symptoms are pretty much constant with minor fluctions. Then, as we settle into the diet and perhaps begin treatment, our bladders calm down and we reach a more steady state. Though there may still be frequency and some discomfort, it is less than when it began. I think of that as my baseline condition, how I now feel most of the time. When frequency/urgency/pain increases noticeably from this baseline, that is a flare for me. When the flare passes, I return to my "baseline" state. As I have found meds that help me, my "baseline" has also improved so when my symptoms increase, it is very noticeable to me, far more noticeable than it would have been in the very beginning. I think of the first few months after my IC began as my very first flare. It lasted quite awhile while I was figuring out what was going on, learned about the diet, did the diet and then gave my bladder time to calm down.

Hope that explains what a flare means, at least to me. If others define a flare differently, I hope they will jump in and add to this discussion!

Annie :butterfly

[shinana]

Annie, thank you for your explanation of Flare. So, at the onset of your diagnosis your pain was more consistent and constant and with time you were able to return to your daily living?
Honestly, I feel bad all the time and infact have turned into a hermit. I have not worked for about 2 months during this whole DX process, but hope to return after a few treatments.
So, on the days I feel somebetter, this last week I had two of those in a row, this could be an example of my off Flare days and what I could expect to feel like.

An an example of a Flare could be what I am experienceing to day: early this morning I noticed a warm, like the urine is actually warmer, sensation with urination and have had increase in pain and urination since. Would you classify this as a Flare?

[Cricketmk3]

Annie2 explained it very well! Shinana, you are in a flare state right now. When you start to get relief and become much less symptomatic, you may experience "flares" where you suffer some of the symptoms you are experiencing now. Hopefully they will not be as severe. This is how you determine if certain foods trigger your flares. Right now, everything probably triggers them but when your symptoms start to subside, certain foods and/or activities will give you pain and trigger a "flare". At least that is how it transpired for me.

[shinana]

Marilyn, So, I quess I have been in a Flare for the last couple of months. Is it common at the beginning for the Flare to last a while?
I just pray for relief to return to my life and living. Honestly, I don't leave the house, because I feel better at home. I did ask my Dr how long before I can return to work and he just raised his eyebrows, as if to say: "your quess is as good as mine".
I am scheduled to have hydrodistention on Nov 10 th and hope that goes well. I realize with some it increases the IC symptoms for a while, but usually with good future results.

[Iris]

Hi Diana, I think Anne did a great job of explaining a flare, I know my symptoms and flare was non stop until I got a diagnosis, and got on the right meds to help me out. I know how you feel though, I pretty much became a hermit, except visits to the doc, and the ER until a diagnosis was made, and am now able to lead a fairly normal life, and can tell when a flare is occurring rather than non stop pain. Take care and keep us posted, hugs Iris. :hi: :grouphug: :flower:

[VickiB]

Diana, my guess as to what your doctor is saying is that there are no guaranteed treatments with IC yet. What works for one person doesn't necessarily help the next person. It's not unusual to go through a trial & error stage until one comes up with the right treatment, or combination of treatments that bring your IC under some degree of control. The good news is most of us do get there!

For me, diet changes made a world of difference with-in the first week. This doesn't help everyone, but if you're one of the people for whom it does, that change alone can be dramatic.

I remember those early days of being a kind of hermit too! It's a heck of a thing when your bladder is basically running your life! Hopefully now that you have your diagnosis, you're on the road to finding treatments that will let you take your life back. And then you'll be on this board telling others how you remember those days when you used to stay at home too!

Vicki

[Annie2]

Diana,

Have you started the diet yet? Most of us find that is the most effective self-help tool we have. You will find info on the diet in the patient handbook which is linked on the ICN homepage. After following the diet for awhile, you may well find your symptoms decrease.

All of us are individuals and, therefore, we have slightly different symptoms, a few different food triggers and respond to meds and treatments differently. Unfortunately, there is no one treatment or med that works for everyone. I think the hardest time for most of us is the time before diagnosis. Once you have your cysto/hydro on Nov. 10 and your preliminary dx is confirmed, you can then begin treatment and begin taking steps to healing. Until then, you can begin the healing process by following the diet. Many of us also find heat or cold helps us when symptoms are bad. I definitely prefer heat and use a heating pad, microwave heating pad or those portable stick-on Bodi Heat pads. Others get relief from cold and use ice packs or those gel packs that have been frozen. You just have to try both to see which, if either one, works for you. Also, my suggestion to you would be to read all you can about this disease, symptoms and meds & treatments for it. Knowledge is power! The more you learn the better prepared you will be to discuss treatments with your doctor and decide which meds and treatments will be right for you. The ICN Patient Handbook is a good place to start reading. Also, many of us highly recommend the book The Interstitial Survival Guide by Robert Moldwin, MD., an excellent reference book that discusses all aspects of IC.

We all can identify with the feeling of being stuck and isolated at home. So frustrating...GRRRR!!! Every one of us just wants to get back to living our lives. There is no cure for IC as yet and no one med or treatment that works for all. It does take some time and, perhaps, some trial and error before you find the exact meds and/or treatments that work for you. I do want to stress to you that most IC patients do reach that point. There are thousands of members of this site but very few are posting here at any one time. That is because most do find treatments that work for them, are busy living their lives and only stop by here occasionally to check in & give hope to those who are new. Someday, I hope you, too, will be doing that!

Sending warm and healing :grouphug:

Annie :butterfly

[shinana]

:angel: Thanks to all of you that answered my thread. Your words of advice and knowledge are appreciated. I recently purchased The Interstitial Survival Guide and expect to find answers to many of my questions. However, it is so nice to have the ICB to go to and get answers from a pt's point of view.
Yes, I have started the diet and find the hardest for me to give up is my morning coffee. I am going to try the decaf teas and hope to find a couple I enjoy. To be honest, I have not had this long enough to R/O what does and does not cause a Flare, because I feel so bad all of the time. Oh well, I am not giving up and pray relief is on its way.

[kelly McC]

Hi Diana,
Just wanted to say I hope your feeling better soon ! The book is great...
Kelly

[Myli]

I've never had much pain, say more than a 2 on a scale of 1 - 10, for more than 3 weeks running. (I only consider it a flare if it gets beyond a 2.) Sometimes the breaks between are short, sometimes month long. I consider myself to be very, very lucky and I think it is because I got treatment so quickly. I've also learned to use an ice bag and uristat, in addition to my regular meds, at the first sign of a flare. That does seem fairly effective in heading off or reducing the pain and length of a flare substantially. So, I have more good days than bad ones now. But it took me a while to learn what worked and to stop hoping a flare would just stop on it's own. Your own best self help in the beginning is the diet, imho. It is really helpful, though you will have to figure out the foods that cause you pain or increased urgency/frequency through trial and error. The diet is in the handbook on the website. http://www.ic-network.com/handbook/

:welcome: Glad you found us, you will find lots of helpful information in the books and the forums. This is a very supportive group of people who always have lots of suggestions and just plain caring for one another.

:grouphug:
Myli

[Cricketmk3]

Shinana, I know how you're feeling and I think at this point you just want to know that your condition will get better and you won't be feeling this way for the rest of your life. The good news is that most IC sufferers find a med/food combination that they can live with and relief is pretty much constant. Although it may take a while. In my case it took several months but at this point I feel fine unless I eat something that I know will bring pain. Sometimes I just want it so badly I'm willing to take the chance. If I end up with pain from it, I ask myself if it was worth the price I'm paying. Sometimes it was but most of the time it wasn't! By the way, I can drink decaffeinated coffee now. Eventually you might try drinking decaf with Prelief at first. I wouldn't try it now though.

[Sarojini]

Hi Shinana,

I think that it's quite common in the beginning to be in a state of constant flare (I often call that "perma-flare"). I know I was during the time I was searching for a diagnosis, and even during the time right after I was diagnosed before my meds began kicking in. The frequency and urgency were awful during that time, and eventually I also developed pelvic pain that often had me on my knees.

However, I am happy to report that once I got on the right meds for me, things have calmed down a lot. I'm feeling a lot better after switching uros and getting on some adequate pain control, and my Elmiron is kicking in and I no longer urinate 30 times a day! I also was lucky enough to be able to quit my job and just focus on my health for three months -- I've been off for two months now, and I think the extra rest, the ability to go to physical therapy for my pelvic floor as often as needed and to go to my uro and other doctors (including a psychiatrist and therapist) at will has been extremely helpful.

So, now, like Annie, I have a baseline level that is still a bit abnormal -- for example I urinate 10-15 times a day and normal is generally considered 7 or less-- but I'm better. This, however, makes my flare-ups much more apparent; if I get stressed out or eat something on my no-no list I REALLY REALLY notice it now because I'm back on the pot 20-30 times a day and my pain increases. However, that doesn't last as long anymore; usually, just a few days as opposed to a couple months like in the beginning :)

Good luck with your treatments, and VickiB is right -- it's a trial and error process finding what works for you. Don't be afraid to give meds some time to work; but also, if you feel they are not helping don't be afraid to discuss that with your doctor. There are so many options out there for you to try!

Good luck!!! :grouphug:

[sylvieCT]

Hi Shianna,

I am newly diagnosed as well and I am just beginning to understand my body in connection to IC. I have been on the diet and meds for three weeks and I just went into, what I believe, is a non-flare, or mild-flare state. What helped me to recognize it was to keep a journal of how I was feeling. In my flare state, I was urinating every 15 minutes or so all day and waking during the night. I was tired all the time and felt a lot of pressure. Today, I am urinating about once an hour and each day it gets a little better. One things that helps me enormously is a heating pad. I don't know why and everyone is different. But, using a heating pad just distracted me from the discomfort. The other sign that I am going out of a flare is that the stream of urine feels longer and more like a relief whereas when I am in a flare it is constant and not a relief. Hope this helps. Sincerely, Sylvie