Hello all,
I was diagnosed a month ago and only showed symptoms a month before that (I know I am quite lucky.)
So this is the 3rd week I have been on the IC diet (strict - only maybe food I have had was avocado and root beer barrels but I didn't get a flare from either). My flares come about 3 hours after I eat something bad and last for a few hours.
I am on Vesicare, Elmiron, Elavil, Allegra, Pyridium and Nucynta for pain. I had a Cystoscopy 2 weeks ago to re-confirm my diagnosis.
Since Monday I have not had any significant pain. IE, I wouldn't even have to take ANY form of medication for pain; not even Tylenol. BUT. I am getting the oddest symptoms from noon-4pm. I feel like I have a fever (but I don't). And my frequency increases. It's not even like a flare for me at all. It's not a flare frequency but it's just like I drank a lot of water and have to pee a lot. Also if I stand up I feel like my head is tilted (the room looks tilted). I am not dizzy, it's just everything's not straight.
Through trial and error I have discovered if I take half of a pain pill (Nucynta) it goes away. The fever feeling, the tilted room, and the frequency.
I told my doctor about this so he tested for infections (since I had the cystoscopy I am guessing) and like he thought there's no infection at all. (I was on a week of antibiotics after the Cysto too).
He can't give me an explanation as to why I feel like this. He basically said, "That's what the Nucynta is for and if I am not afraid of you being on it for a while you shouldn't be either." But I am. I don't want to stay on a narcotic for longer than I need to. I know Nucynta is less habit forming and doesn't screw with your head as much as others out there but still.
Any suggestions as to why this is happening? It basically feels like the flu every afternoon for me.
I have tried drinking more water (2 is what my norm is; I know this is low for some people but I have a lower tolerance for water (Yes I am a medical freakshow heh) and I work from home so I don't need as much as I did say when I was in school). But I have tried drinking 5-8 a day just to see if it was that. It only made me further ill.
Basically I am at a loss as to what to do. I work in the afternoons and I can barely concentrate because of this.
How long did your first 'flare' last? I feel like I have 2 kinds of flares. The horrible ones (like when I drank a Red Bull last month) and I hits me for 3 hours hardcore. And then a 'constant' little flare like I am still having even with the meds/diet.
At this point I am kind of just depressed. I think it's mostly because in the span of 2 months I went from totally healthy to totally not healthy. I didn't even get the chance to have like my favorite last meals before I had them ripped away from me. I have lost 10 pounds in my diet weeks just because almost all the 'good diet foods' happen to be ones I hate. So it's a lot of oatmeal, PB, chicken, potatoes and noodles, and cucumbers for me. How long did it take you guys to 'mourn' your old food
My mom (bless her) is trying to make me some OK recipes like jack mac and cheese, and red bell pepper sauces (to substitute tomato) and cottage cheese ranch etc. But since I hate jack cheese and peppers and cottage cheese to begin with I am not liking these at all.
My doctor thinks that my IC (ulcers/sores) came from Red Bull mostly. I was a 1-3 a day drinker. I like the taste (it stopped giving me energy years ago) so I was drinking those in substitute for sodas. Basically my cysto showed that when my bladder stretches my bladder lining does not - it rips apart hence my sores. And that because of the Red Bull I can't even have spicy foods now because my bladder lining is pretty non-existent. He told me I could probably even have any food I wanted with some prelief (minus caffeine, spicy foods, and alcohol) but I am scared to try. I wanted to get this long flare over with first.
*sigh* Sorry this is so long. I am just so desperate.
I was diagnosed a month ago and only showed symptoms a month before that (I know I am quite lucky.)
So this is the 3rd week I have been on the IC diet (strict - only maybe food I have had was avocado and root beer barrels but I didn't get a flare from either). My flares come about 3 hours after I eat something bad and last for a few hours.
I am on Vesicare, Elmiron, Elavil, Allegra, Pyridium and Nucynta for pain. I had a Cystoscopy 2 weeks ago to re-confirm my diagnosis.
Since Monday I have not had any significant pain. IE, I wouldn't even have to take ANY form of medication for pain; not even Tylenol. BUT. I am getting the oddest symptoms from noon-4pm. I feel like I have a fever (but I don't). And my frequency increases. It's not even like a flare for me at all. It's not a flare frequency but it's just like I drank a lot of water and have to pee a lot. Also if I stand up I feel like my head is tilted (the room looks tilted). I am not dizzy, it's just everything's not straight.
Through trial and error I have discovered if I take half of a pain pill (Nucynta) it goes away. The fever feeling, the tilted room, and the frequency.
I told my doctor about this so he tested for infections (since I had the cystoscopy I am guessing) and like he thought there's no infection at all. (I was on a week of antibiotics after the Cysto too).
He can't give me an explanation as to why I feel like this. He basically said, "That's what the Nucynta is for and if I am not afraid of you being on it for a while you shouldn't be either." But I am. I don't want to stay on a narcotic for longer than I need to. I know Nucynta is less habit forming and doesn't screw with your head as much as others out there but still.
Any suggestions as to why this is happening? It basically feels like the flu every afternoon for me.
I have tried drinking more water (2 is what my norm is; I know this is low for some people but I have a lower tolerance for water (Yes I am a medical freakshow heh) and I work from home so I don't need as much as I did say when I was in school). But I have tried drinking 5-8 a day just to see if it was that. It only made me further ill.
Basically I am at a loss as to what to do. I work in the afternoons and I can barely concentrate because of this.
How long did your first 'flare' last? I feel like I have 2 kinds of flares. The horrible ones (like when I drank a Red Bull last month) and I hits me for 3 hours hardcore. And then a 'constant' little flare like I am still having even with the meds/diet.
At this point I am kind of just depressed. I think it's mostly because in the span of 2 months I went from totally healthy to totally not healthy. I didn't even get the chance to have like my favorite last meals before I had them ripped away from me. I have lost 10 pounds in my diet weeks just because almost all the 'good diet foods' happen to be ones I hate. So it's a lot of oatmeal, PB, chicken, potatoes and noodles, and cucumbers for me. How long did it take you guys to 'mourn' your old food
My mom (bless her) is trying to make me some OK recipes like jack mac and cheese, and red bell pepper sauces (to substitute tomato) and cottage cheese ranch etc. But since I hate jack cheese and peppers and cottage cheese to begin with I am not liking these at all.
My doctor thinks that my IC (ulcers/sores) came from Red Bull mostly. I was a 1-3 a day drinker. I like the taste (it stopped giving me energy years ago) so I was drinking those in substitute for sodas. Basically my cysto showed that when my bladder stretches my bladder lining does not - it rips apart hence my sores. And that because of the Red Bull I can't even have spicy foods now because my bladder lining is pretty non-existent. He told me I could probably even have any food I wanted with some prelief (minus caffeine, spicy foods, and alcohol) but I am scared to try. I wanted to get this long flare over with first.
*sigh* Sorry this is so long. I am just so desperate.
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