when IC is getting better...?

[Dewshine]

I was diagnosed with IC about 3 months ago. I have almost continuous (round the clock) burning, urgency and pain. It can go on for days without even a small pause. I am not under any medication right now, except for Zopinox that I use to get sleep-- because otherwise I can't because of the pain.

I have now been following the IC diet for less than a week (and might I admit that I truly HATE HATE HATE it). The burning is getting weaker all the time, I know have some hours every day when it does not burn, but the frequency is now more noticable. So am I going "backwards" -- from pain to frequency (I had frequency almost two years at least before I was diagnosed with IC but it never bothered me and I never understood there was anything wrong with me. I also had IBS and heartburn, altho I have never been overweight and was a vegetarian -- didn't eat unhealthy either.)

I am reading the book "Solve your Interstitial Cystitis Puzzle" (or something like that). I am following most of its suggestions (magnesium, calcium, vitamin-D, herbs, food, aloe vera...), some of the things are not available here in Finland (like paracite testing etc). I do feel like perhaps I am getting better, for example my saliva pH is 7,0.

My question is: is it possible that when I am getting better that my symptoms go backwards? I have heartburn almost every day now but the burning in my bladder is lessening. I also get weird headaches and shoulder pains that I remember that I had before IC.
Thus -- is it possible that while on my road to recovery I am actually tracing my own symptoms backwards, getting old symptoms back while the new ones are (hopefully) disappearing?

Thanks for any help you can offer!

Miu, Finland

PS. And I do need to stress that I HATE HATE HATE the diet!!! (I am so furious that I can't enjoy life like I used to. I can't even go jogging because of the pain and sometimes I can't wear jeans because of the pain...but both those things I would not mind if I could just have my wine, bluecheese and chocolate cake.)

[tigger_gal]

did your doctor offer you any medications at all?

[jubejube]

Hi Miu,
Im sorry you are having such a tough time right now... hopefully your docs will be able to find a way to help you get some relief soon...
I understand how you feel about the diet. When I first started it drove me crazy and i hated it as well... I was recently diagnosed in May, and am still dealing with the diet. It aggravates me that I am dealing with this disease, as well as having to change my entire life and things I used to enjoy, i cannot anymore. You are not alone in feeling that. It is a tough diet to get used to.
But the diet is just a guideline to help you to feel better... right now, I would eliminate everything off the Not usually ok list, and then introduce them one by one into your diet, to see how you react. I have learned that stress is a huge factor for me and that some diet foods trigger me, but so far, im ok with others. And there are ways around things that you will find on this site.
For example, I find if i drink alcohol mixed with water, such as Malibu Coconut Rum with water and lots of ice, I will not be in pain. Things like soda trigger me and Red Wine unfortunately is a bust for me.
But there is also Prelief that alot of people are talking about on here, that takes the acidity out of foods, and allows some ICers to have some of the foods they want... occasionally I believe.
I havent tried it yet. I know its not available in Canada, so we are planning a trip to the US to go shopping and I will pick some up then. Im not sure, but maybe its available to you in Finland?
I have also been to see a Naturopath who was able to offer some suggestions for me personally, so maybe that will be another route to find some relief for you?
Sorry to hear you are having such a rough time... remember the diet is a guideline and sometimes you can tolerate certain foods that are on the list. Try eliminating them and adding them back to see how you react.
Hope you find relief soon!

jube

[kadi]

Hi Miu,
The "Solving the Interstitial Cystitis Puzzle" book is pretty controversial here. Some of the supplements the author recommends can cause IC symptoms to worsen.
The best guide (and most medically accepted book) on IC is the "Interstitial Cystitis Survival Guide" by Dr. Moldwin. It is available on amazon.com or in the ICN shop linked at the top of the page.

The diet takes several weeks of strict adherance before many patients notice a difference - it's a great sign that you're feeling better on it already. Do become a label reader & avoid chemical & acidic preservatives & colorants. Packaged food in the US is full of those things, hopefully Finland's food supply is healthier in that respect.

Do hang in there with the strict diet, it's the most effective treatment available for IC and for many of us, the medications won't work without it. Eventually you may be able to add things back in one at a time, but give your body a chance to heal with the mildest foods right now.

Hang in there. I hate the diet too, but if I don't follow it, I am so sick, I have no quality of life at all.

All that said, when I first got sick with IC, I was voiding 60x a day, completely unable to sleep, eat, work, drive, wear jeans or pants, exercise, do anything. Now, after figuring out my diet & activity triggers, working out a treatment plan with my doctors, I feel good most days, work full time, exercise at the gym, go hiking, wear jeans almost every day. I still flare, but a bad day now is nothing compared to my early times with IC.

Hang in there, sending a hug across the miles,

[Dewshine]

I was offered no medications at all, well actually a lot of them but they made it impossible for me to function at all (like pills for psychosis whish I do not have and pills for altering my mood which I do not wish to have. My mood is fine, thank you -- the pain is the only thing clearly wrong with me) . Right now I have parasetamol (which does not work at all and I don't use it) and that's that. The doctors in Finland are not very keen to medicate people which I think is actually good.
Now my doctor called and told me that he'll give me a prescription for Triptyl. But I do not wish to use anything that is meant for altering the mind or my moods or anti-depressants. I am what I am and my feelings and moods are normal in this situation. I need help with the pain, not with feeling bummed out about the pain.

I think the book I mentioned ("Solving your IC puzzle") is quite controversial as well. I do not follow all its advice, 'tho I hope in time my body will be able to handle fruit and berries as well, and perhaps green tea too. I really need my caffeine.
I am still eating sugar and bread. Because I don't want to give everything up. And I must say that I dislike eating brown rice because I get a headache from all the chewing :lmao: But otherwise I am trying to be "a good girl".
I had a new visit to a new urologist yesterday (since the first one knew nothing about IC and told me to just take my opiathes and eat whatever I wish). But he didn't know anything about IC either (or almost anything) and was very sceptical about the diet as well and said "Where on eart did you make up such a diet?" It's very difficult to begin talking to your doctor if they know near to nothing of your condition...

I am really thankful for all your support! It helps!

I will get the book you guys recommended.

Miu, Finland

[ICNDonna]

I know you have said you don't want to take antidepressants, but one thing they do even at low doses is to interfere with the pain receptors in the nerve system --- so you feel better without the low dose effecting your alertness.

One thing I do suggest is that you make a list of all of the herbs, supplements, etc., you are taking and discuss them with your doctor. Even though some feel that if they are herbal or "natural" they are safe, but that's not necessarily so. At the very least, I suggest stopping all of those and when you start them, do it one at a time, with a couple of weeks between each addition so you will know if any are a problem.

And the diet is very important to nearly all ICers.

Sending healing thoughts,
Donna