Those DX w/ IC - do your symptoms change during the day?

[shortstuff]

For those of you w/ a definite positive diagnosis of IC by a medical professional - do your symptoms of IC wax and wane within each 24 hour day? Do you ever find that you feel crappy for 3-4 hours or even days and then you're OK for a few hours or days? That some nights are hard but others you sleep through? Please would you also tell me what led your doctor to give you a positive diagnosis (hydro, symptoms alone, etc.)? I am trying so hard to figure everything out even though I have a DX of PFD - I'm still sooo confused.

[BT2008]

Hey shortstuff,

I truly hope that you do not have IC!

I have had severe IC since last June, dx'd in September, via cysto/hydro (see my signature for details).

At first, I was just living day-to-day. As the disease progressed, however, I have been living hour-to-hour, never knowing how I am going to feel even a few minutes from now...

So...in answer to your question, most definitely! I may feel pretty good right now, but I may go pee in a little while and the pain will increase dramatically. Or, I might still feel pretty good when I go to bed, only to wake up with severe pain while I'm trying to sleep...:rolleyes:

But, that's life with IC...for me anyway!

~Beth

[vm]

When I was symptomatic my symptoms definitely fluctuated day to day - even within a day. It was pretty frustrating to feel good and think maybe I was getting better - and then within a few hours feel back at square one. Then I decided to look at it as a gift that I had those good hours and good days. That helped some of the time.

[VickiB]

Before diagnosis my symptoms would fluctuate, daily, weekly and monthly! There seemed to be no rhyme or reason for when it would strike or how bad each episode was going to be. In hindsight I suspect these fluctuations were probably caused by my diet at any given time.

My doctor based my diagnosis on a long history of symptoms, numerous tests for other possible causes that always came up empty, and finally the Potassium Sensitivity Test.

Hey Shortstuff, it's quite normal to be confused at the beginning! You'll get through it!

Vicki

[Kirs10]

I am definitely an hour aor two hour person I can feel great for a while and then feel awful 10 minutes later. It has been like that for me from the beginning. That is why it was hard to get diagnosed they kept telling that it was in my mind that pain didn't switch sides and that I need to go on the pill.
So now it is the same I have a hard time making plans because I never know how I going to feel, and what I am going to be able to do.
That is my experience, hopefully that is helpful for you.

[Briza]

For those of you w/ a definite positive diagnosis of IC by a medical professional - do your symptoms of IC wax and wane within each 24 hour day? Do you ever find that you feel crappy for 3-4 hours or even days and then you're OK for a few hours or days? That some nights are hard but others you sleep through? Please would you also tell me what led your doctor to give you a positive diagnosis (hydro, symptoms alone, etc.)? I am trying so hard to figure everything out even though I have a DX of PFD - I'm still sooo confused.

The first 12-18 months, my symptoms were severe, constant, 24/7.
Now, they are just as you describe, so yes, yes, and yes about how your symptoms come and go is the same for me..they come and go as they please these days, and I can feel fine one second and for seemingly no good reason I can be in full blown flare the next...but luckily now I have good treatment plan and can often be proactive by taking my meds before symptoms start because now I know what CAUSES my symptoms (food triggers, stress...physical and emotional, long car rides, having to hold it, getting dehydrated, going to the mall/Super Walmart ...really any kind of shopping!!! etc.,) and I NOW know which treatment or combo of treatments to take for each symptom(s)...THAT has helped me much in being proactive in preventing symptoms BEFORE they start, rather than waiting til they set in.
I was diagnosed after seeing many drs over a year's time...finally...based on symptoms and results from cysto/hydro/biopsy. I also have PFD, which I believe I have had possibly my entire adult life, or at least since the onset of my IC symptoms, but I think the prior much more likely even tho I did not learn about it until I became educated about IC and related conditions. Yes, PFD and IC are often sister conditions. Take care! I hope you find what works for you!:pray:

[TerryW]

For those of you w/ a definite positive diagnosis of IC by a medical professional - do your symptoms of IC wax and wane within each 24 hour day? Do you ever find that you feel crappy for 3-4 hours or even days and then you're OK for a few hours or days? That some nights are hard but others you sleep through? Please would you also tell me what led your doctor to give you a positive diagnosis (hydro, symptoms alone, etc.)? I am trying so hard to figure everything out even though I have a DX of PFD - I'm still sooo confused.
Hi Shortstuff,

I feel exactly the same! I'll feel horrible for a few hours, then maybe better for a few. Sitting down is bad, with driving being the worst. I've had flares that last months, so I don't know exactly what causes it. I've been diagnosed by several cystoscopics and hydros.

I'm also beginning to notice that when I lift something heavy, the next day or two will be a big flare. I'm sticking to the diet, and taking Lyrica now. Seems to help. Good luck.

Terry

[Bella Spirit]

Hi Shortstuff

I personally think that is the most sad part about having IC - not knowing how you're going to feel from hour to hour, minute to minute, day to day.
But you can definately start to manage that over time with medication, diet and other things. There is definately hope so don't despair :) :grouphug:

[SharonA]

Before I got my symptoms under control, I would wake up in the morning feeling very good but by noon, the pain would begin and would slowly increase during the afternoon and be terrible by bed time. Then I would go to sleep to wake up the next day feeling fine and the whole process would start all over again. This lasted for several months until I found a PCP who knew about IC and prescribed Elavil. That turned out to be my miracle medication. Plus I learned about the IC Diet and discovered what in my diet are triggers for my symptoms to rise up and give me problems.

[blondie_1147]

I will feel okay during the day and then when evening comes I feel like crap. The pain will set in and the low fever. I am bloated, miserable, and wish it would go away. I am a medical transcriptionist and I am having to sit here and type for hours on end.

[songbird7]

We are very strong people riding the surf of IC. Sometimes I think IC has a mind of its own. I experience these ups and downs too. Sometimes ok all day, not so at night or middle or night or early morning. Other times I can have 6 days and nights of remission. Then who knows what after that? I'm thankful for the moments I feel ok but it is discouraging to have IC symptoms return again later. It really helps me to go to our community online today. Sometimes I post more often than not but everyone is in my prayers. I too, have some interesting times trying to plan things. My partner of almost 30 years wants to go somewhere this week but public transportation to another city may cause flare or who knows what. So I said to go, enjoy, and tell me about it later. If it is really something I want to do which won't involve a lot of physical expenditure, I may take a chance. I compromise and mostly do things once in awhile in the town I live in. Or, let my son pick me up in his car to his house. How I will feel I never know, but living each moment at a time helps.
I hope this helps.
God Bless everyone here and those not here with this strange disease.:pray: