Overwhelming

[Waves]

Hi,

I was just diagnosed a couple of weeks ago with IC, though I had had symptoms for many years within the same healthcare system. I'm a bit frustrated about that, but I'm trying to let that go.

It's very hard to know where to turn with the dr's recommendations, and website recommendations. Today I did have a good chat with a local contact mentioned on this site, and it felt like the FIRST time that I had spoken with anyone who actually had a sense of what I've been going through. She had many good suggestions. I actually found out the Elmiron is affordable, which my doctor had said was not the case.

My doctor (probably won't choose to stay with her, and my insurance will change) recommended six hour doses of Extra-strength Tylenol and Advil, and the Advil is just too hard on my stomach.

I'd be interested in knowing how people cope with the pain when it's most intense and when it's ongoing. I'm completely open to anyone's thoughts. I need to stay alert for work, so I'm trying to balance that with keeping the pain under control. I've also loved to do sports and camping . . . I know that some people have this where it's manageable, but what helped most in the beginning?

Thanks,
Waves

Diagnosed 6/4/07
Taking Tylenol and Alleve, Vicodin only at night if really bad,
Changing diet -- oooh no more chocolate
Using heat (best help)
Trying Glucosamine (will try the other supplements one at a time to see what helps)
Also have IBS, migraines, allergies

[GriffsMommy]

I'm sorry that you were just diagnoised but I'm happy that you found us, this really is a good website and support system.

I work full time in an office setting and I find keeping a heating pad always plugged in at my desk can be a life saver. It is really nice to be able to use that on my pelvic region or my back if I'm really hurting. I also will keep at least one vicoden with me at work so if the pain gets too bad I at least have the option to take one.

It's so hard to work full time with horrible pain, I know, I hope that you get a good treatment plan in place and start to feel better soon.

[Roxie2007]

HI Waves!
I'm glad you are here too........sorry you have IC though!
It sounds like you haven't tried Elavil? It's a prescription and really helps with pain, urgency and frequency. Have you tried Azo for pain? It a bladder anesthesia....really helps....and is over the counter.
There's lots of info here on this site.....Hope you find some help! Roxie

[VickiB]

Hi Waves, and welcome!

I was diagnosed by a doctor who doesn't believe in giving pain meds for IC, so am pretty much left to self-help treatments when flaring. These are my strategies for coping with IC:

Increase my water consumption (Untreated water!)
Eat only IC safe food & drink
Decrease my activity
Azo or Uristat (OTC bladder med)
Sitting in a warm bath
A bottle of cool water to rinse with after urinating (helps with the burn)

I'd have to say the thing that helped me the most in the beginning was the IC diet. Also this site, where I learned most of my self-help tricks & lots of support from really nice people!

Hang in there, -for most of us living with IC does get better!

Vicki

[Waves]

Thanks to everyone for responding

Thank you to everyone for the support -- very hard to go through alone when most people have never heard of this.

I have tried some of the suggestions, but right now the diet is the big challenge for me. Nutrition hasn't been a strong point for a few years (OK, really more) so I'll work on that. Most of the trigger foods are now gone from the house, so that makes it easier I did see a naturopathic doctor/nutritionist, but I'm finding that even some vegetables must be more acidic than others -- had a bad reaction to beet greens. He emphasized seeing the foods I choose in a more positive life, as healing -- just hard when I want a triple shot latte, chocolate, orange juice, chocolate . . .

My less-than-great diagnosing doctor had said that the Elmiron (spelling?) wasn't affordable, but I've learned that it is, through connections from this website. So, I've asked her to give me a hard copy Rx, so I can get it!

The Azo, Pyridium is too harsh on my stomach, so that doesn't work. Much of my pain is general pelvic pain with some sharp pain. With IBS, sometimes it's a bit hard to tell what's what.

The diagnosis explains many past physical problems though.

Again, thank you to everyone.

[Trishann]

Waves at the beginning the diet is a great way to try to get it under control. Sounds like you already made steps to try to get it under control. Elmiron is good for some people but it does take awhile to work so you will have to give it time.

I love chocolate but that is a fast way to irritate the bladder. Tea is my worst enemy. You will find things immediately and than you will find things you can eat but not to much of it.

Hope you start finding improvement in your health by what you already started. You are already on the right track, hang in there.

Take care, Trishann

[L. Thomas]

I think I am one of the odd balls. I have a lot of symptoms but pain is not on the list. Well at least it is not daily. I know there are lots of people here that have horrific non-stop pain. I so admire them. Some of them are awesome. I don’t know how you do it with daily pain.


Just remember, there is power in number. You have lots of support here.
Glad you have joined us.