I hurt and I am frustrated!

[lookwho3]

Hello everyone, I hate this IC. My whole life is crazy now and the pain is unreal.
For the past year plus I have been on Nutrisystem and I lost 30 lbs. I was so happy and in the summer I transitioned form all Nutri food to good healthy food and some of the packaged stuff.
I was just diagnosed after going to the gyno, and two uro gyno's with IC.
MOST LIKELY, hell they can't even tell you if for sure you have it.
And the medication Elmiron, they say it may take months to work. and meanwhile like someone else's post i read, it BURNS like hell. I tell people, the few that I tell, that it feels like a urinary track infection, but inside it burns.
The food change has been driving me nuts! I shipped back my last order of Nutrisystem and still have just a few items here. But I have no desire to eat them!
I am wondering if anyone else was on Nurtisysytem and had a flair up or diagnosis of IC, maybe the food contributes to it????
I have been taking the Elmiron since mid Oct. I feel no relief. I have been limiting my food choice as per the list, still it hurts. I feel no different!
Recently i went to my rheumatologist, who understands my pain, I have Fybromyalga, IB, and a bunch of other pain which included my back, neck and knees and well, its too depressing to lets just say I hurt everywhere and I burn inside! Anyway, he gave me a dose of pregnazone and some pain meds.
Well, i can't function with the pain meds, so they are only used at night and now the dose of pregnazone is through and the all over pain is returning to join the new kid in the body IC!
No wonder I have been crying alot. To my family who loves me it is just something else wrong with me. They are good people but have had to deal with years of me in pain and complaining. I get it. BUT I HURT
So, I am frustrated because there seems to be no definitive cure for the pain, and the food choice are so far from what I use to eat. all my healthy vegetables and fruits are gone! With my IB the only fruit i can tolerate are, blueberries and gala apples.
And how do i even know that this crazy food replacement is working since I am still in the same amount of pain?
I hate this!
Poor me poor me, poor all of us that have to deal with this.
Comments and support welcome.
I hope you all find some soothing time tonight.
TR

[leelee88]

I am so sorry you are hurting...((((hugs))))

[GriffsMommy]

Oh man, it sounds like you're having a really rough go of it. I can't speak of the Nutrisystem food as I have never tried it. If it has a lot of preservatives in it then it could cause flares I would imagine. Is the only thing they gave you Elmiron? There are many other things to try, Elavil is a antidepressant that if you use at a low dose can help with the nerve pain but you may already know about it because of your fibro. Some people have lots of success with rescue instills which is where they put soothing meds in your bladder through a cath and has been a great treatment for alot of people.
I would suggest that you take a look at the patient handbook. The link is at the top of the page and there is tons of info there to hopefully help you. I hope you get some relief soon, I know how hard it is to be in pain all the time. It really does wear you down. :grouphug:

[runningemiles]

I am so sorry and feel your frustration. I too have IC and have had it since March after about two years of thinking I have chronic UTI's. My gyno too disagnosed me but now I am seeing a urologist that specializing more in this. I will say it took about two months for me to tell the difference on the Elmiron. I continue to be unsure of all the food b/c for me too since I have not have a great deal of relief I wonder why not eat what I want. There are a "few" things I have noticed but otherwise I am confused on all that. I will tell you it is hard b/c we "look" so normal but it really is a bad, bad, illness. I have hope that we are going to find some answer and figure this out. I know of one person that is doing fairly well on the UTA capsules (that should help your burning) and Elavil (which makes me too tired). She is doing much better. Another person had the new interstim put in which is on the cutting edge of treatment for IC and has been completely pain free. I am almost to the point of willing to do surgery. They can make a diagnosis if they do a hydrodistention where they go in your bladder and can see if it is irritated, has ulcers, etc. So you might want to looking into that. Sometimes that helps symptoms to decrease. It didn't mine but everyone is different. Feel free to vent as that is what we are all here for. Thank the Lord for the website. I have just started getting on it this week and have found SO many helpful things.....

[hdb1982]

As you learn more about IC you will learn not all IC'ers are diet sensative. I did the restricted diet and only ate foods on the ok list and I still was in horrible pain. so my uro and I decided if it isn't helping why restrict myself when I don't have to. Weight isn't an issue for me,thank God, so I eat what I want. After some people hear what I eat they question me if I have a definitive dx of IC. I told one person I have the pics if she would like to see them then she can watch me eat salsa, drink coke, eat chocolate and a few margaritas and and then she will see it don;t effect me. All I am saying is don't get hung up on the diet thing. For some it is a lifesaver others it doesn't make a difference. Hope you find something that works.

[lookwho3]

You are all so helpful : )
There is so much to know about. I am feeling so lousy that I haven't been able to read all that there is out there. I have read a lot, and I have printed out the food recipes and the manual info.
I have my next apt with the uro gyno soon, gezz it takes so long to be seen and to find this nice one.
I just get scared and think, if it isn't this maybe something is really wrong that we haven't caught yet!
Some of my no IC friends tell me i should see a regular Uro but the old gyno told me NO you need one that specializes in women's issues, thus the uro gyno.
But I don't know I am thinking of making an apt. with a reg. uro. what does everyone think?
good point about the food being a personal thing as far as how we all will react.
But I was eating a lot of spicy food on Nutrisystem and some of it had preservatives.
The kicker is, and I am sure a lot of you face this.
I LOOK normal, healthy, but maybe a little tired. So people expect me to be that way, but I feel so dragged out.
Oh here is something I have been wondering.
Does it hurt anyone else a lot when you sit for a while. Mad I get to where i want to jump out of my skin and then i feel like I am having the mother of all hot flashes that just doesn't go away!!
BTW I wear a Hormone replacement patch and had a full hysterectomy in 2004.
Can any one else relate to this feeling?
thanks TR:

[GriffsMommy]

I can relate to the pain while sitting for along time. This really bothers me when I'm in the car for awhile, ouch! I have just started noticing it is a problem at work as well but didn't really realize it before because I have so much pain it's hard to tell where it's all coming from.

[dverba]

with me if I eat the wrong thing I know because my pain level goes from a 6 or 7 to a 10 within 5 min. Thats why I stick to the diet(which is very new for me as well). Just keep talking and reading, this site seems to keep me steady.I hope you feel better soon.

[lookwho3]

Yeah, I know what you mean. The never ending pain does seem worse( if that is even possible) when I eat a few things, so I keep cutting things out.
I miss my healthy food.
Hav a happy thanksgiving.......

[Sally939]

I am sure not everyone is diet sensative. But lucky me, I think I am. I thought I was on the diet in the begining but untill I was very strict my pain did not stop. Also, I found out that (I think) dairy also caused me to flare. My uro makes you get an allergy test. They said I was allergic to dairy. I have no other symptoms of being allergic except my bladder. I am not suggesting that dairy is your problem. I am suggesting that maybe something that is traditionally ok for IC is hurting you. Maybe try to get down to a small diet and add back. Just an idea. Regardless, I hope you feel better soon.

[mpizze619]

TR,
I can definitely relate to you pain and your diet issues. I was on Weight Watchers for a year and lost almost 50 lbs - I was eating WW meals and diet foods - then in Jan I started with what I thought was a UTI - unfortunately it turned out to be IC - which we haven't been able to get under control yet. After much research I think we may have been susspectible to IC but since we ate all those foods with perservaties it just aggrevatd it and brought it on. Then they put me on different meds and I've gained 15 lbs back. I haven't been able to exercise or eat any of my pre packed diet foods. I just want my old life back. I hope you feel better soon. If the dr gives you elival - prepare yourself - it makes you HUNGRY!!! It took me a few months to be able to control my appetite while on it - they finally switched it to cymbalta which doesnt seem to make me as hungry. Good luck to you - i hope you find what will work for you to make you pain free. Also go to as many dr's as you need until you find one that you feel is helping you.

[lookwho3]

I am sure not everyone is diet sensative. But lucky me, I think I am. I thought I was on the diet in the begining but untill I was very strict my pain did not stop. Also, I found out that (I think) dairy also caused me to flare. My uro makes you get an allergy test. They said I was allergic to dairy. I have no other symptoms of being allergic except my bladder. I am not suggesting that dairy is your problem. I am suggesting that maybe something that is traditionally ok for IC is hurting you. Maybe try to get down to a small diet and add back. Just an idea. Regardless, I hope you feel better soon.

Thanks for your input. I am trying.
I hope you are having a good day

[lookwho3]

TR,
I can definitely relate to you pain and your diet issues. I was on Weight Watchers for a year and lost almost 50 lbs - I was eating WW meals and diet foods - then in Jan I started with what I thought was a UTI - unfortunately it turned out to be IC - which we haven't been able to get under control yet. After much research I think we may have been susspectible to IC but since we ate all those foods with perservaties it just aggrevatd it and brought it on. Then they put me on different meds and I've gained 15 lbs back. I haven't been able to exercise or eat any of my pre packed diet foods. I just want my old life back. I hope you feel better soon. If the dr gives you elival - prepare yourself - it makes you HUNGRY!!! It took me a few months to be able to control my appetite while on it - they finally switched it to cymbalta which doesnt seem to make me as hungry. Good luck to you - i hope you find what will work for you to make you pain free. Also go to as many dr's as you need until you find one that you feel is helping you.

Hi,
Gezz here I am thinking it is something they put into the Nutrisytem,which it could be, am so frustrated with the weight thing. I am a WW lifer. Reached my goal years ago, and then lost it again and again.
That's why I like the Nutrisytem I felt like it was like WW cause I had to add all these healthy things.
I hate this, my tire is coming back!
My weight is all over the place.
AND I have inspired a family member
and a friend to try Nutrisytem, CAUSE I Did so Well! ug SO UPSET.
I don't get the food stuff too much yet, trying , but miss my fruits and vegs.
go figure!
The pasta and all these carbs are bloating me!
Keep in touch, maybe we can set up a chat to vent and cry and encourage each other~
Happy Thanksgiving.
TR

[muxerr012]

I hope I can help you and I'm so sorry you re hurting!! I too ws recently dx'd with IC and fibromyalgia. The pain is neverending! I FINALLY found some things to help:

Lyrica 50mg 3 times a day for the fibromylagia which has been such a relief! I can't work on pain meds but I CAN take the Lyrica 3x a day no problem. MY PAIN IS GONE! It's a neuropathic pain med and it has literally stopped the overactive nerves that upset my bladder, back, neck, knees, wrists, etc. It is a miracle drug for me!

Prelief which I take with every meal has helped with stomach upset from the IC. It's over the counter and cheap too.

My life has changed with this new med (Lyrica) and I wonder if you should ask your doctor about this? Good luck and be well. Happy Thanksgiving to you too!!

[lookwho3]

I hope I can help you and I'm so sorry you re hurting!! I too ws recently dx'd with IC and fibromyalgia. The pain is neverending! I FINALLY found some things to help:

Lyrica 50mg 3 times a day for the fibromylagia which has been such a relief! I can't work on pain meds but I CAN take the Lyrica 3x a day no problem. MY PAIN IS GONE! It's a neuropathic pain med and it has literally stopped the overactive nerves that upset my bladder, back, neck, knees, wrists, etc. It is a miracle drug for me!

Prelief which I take with every meal has helped with stomach upset from the IC. It's over the counter and cheap too.

My life has changed with this new med (Lyrica) and I wonder if you should ask your doctor about this? Good luck and be well. Happy Thanksgiving to you too!!

Hi there,
Well, I was actually thinking about the Lyrica today. Prior to my Diagnosis for Ic.
I have taken it before for my chronic Tendinitises in my foot.
A lovely side effect was that my fybro pain went away, just as you said.
I felt great, except, I was so tired and I had a lot of trouble concentrating.
I took it for 6 months this past year. Just like you 50 3 times a day.
It was good, but I need to be more alert then it allowed. Although sitting here with all this pain I am thinking, well maybe I could take it for a while.

Hope you had a good Thanksgiving.
TR

[born2swim]

I'm sorry to hear about the burning! I know that some people get help with Pyridum, Urelle, Urised, or the OTC form AZO. Try going to Walgreens and get some AZO to help you for a bit. You can't take it long term, but maybe it will give you a few days of peace.

My bladder symptoms started after I lost a tremendous amount of weight (145 pounds in 11 months). Maybe the hormonal change with weight loss plays a role in development of IC?

[muxerr012]

How was your Thanksgiving dinner? Were you able to eat much and still feel ok? I sure hope so. I went back and read alot of your previous posts and I KNOW there is so much hope for you to be back to the person you want to be! Please hang in there. You and I have alot in common. I too am on the hormone Vivelle DOT patch .05mg. It has been a huge relief. Make sure you're getting the right dose-not too little and not too much. Dosage of the patch makes a huge difference.

Also I had to wait 3 months to get in to see my URO/GYN. I called a regular URO and they too are booked. When I talked to a nurse at the URO/GYN office she told me this doc in Ft Worth was the ONLY doc certified in IC treatment in the entire county (Ft Worth is huge). This kinda blew me away. Point is I think it is very important you see a URO/GYN vs. just a URO. The nurse told me that IC was this doc's passion-so I'm gonna trust in that for now. I haven't had my 1st appt yet (had to reschedule due to a molar and partial jaw bone extraction). I can tell you I found out the mother of all pain with that surgery-it was skull rocking! I have ALL the luck when it comes to stupid little things like biting into a tiny shrimp and having my tooth crack in half, on a Sunday no less! I say Only ME!

As far as the Lyrica 50mg. I'm also taking an antihistimine which I think makes me kinda hyper so this may help balance out the effects of the Lyrica for me. You'll notice many IC'ers are on antihistimines because allergy plays such a big role in IC. Just a thought to try and help you. I also suffer chronic insomnia and fatigue so I don't really notice being tired sometimes. It's just how I feel most all the time.

I'm trying to speak to all I read in your posts so sorry so long...I had a partial hysterectomy 4 years ago and I believe this was when my IC started. Many of us seem to get IC directly after abdominal surgery-especially hysterectomies. I had pain in the hospital and they kept putting the cath back in. My doctor said no infection and treated me like I was overreacting to the bladder pain. The IC laid low for 4 yrs and came roaring back in May 2007. I still struggle with the IC diet but it has helped me SOO much. I eat alot of baked chicken with olive oil and basil, fish, rice, pasta and potatoes. Pls just try it and see if it calms your flares. I've been on the diet for nearly 4 months and can now eat small quantities of new foods!

Lastly....sitting pain. YES! Car rides-UGH! Chair at work-UGH!!!! Have you tried the Estrace hormone cream? It has worked wonders for me and 95% of my pain down there is simply gone. I am so blessed that many of these meds and remedies came to my life so quickly-almost by accident. So many IC people suffer for years without any relief at all. It breaks my heart and it makes me want to tell everyone what has worked for me and changed my life. I am feeling "normal" again! In closing I also have to say that Prelief is key to happy eating!! I love to eat. It's the best $10 ever spent!

I hope this day finds you well and at peace. Try not to worry about your family and what they think-stress is so bad for IC. I wonder the same things with my family and ex-fiancee who still lives here and has been taking care of me non stop for months. If you can break the pain cycle-AND YOU CAN-your life will begin to look so different. I wish you well and I pray you find some relief verrry soon. PM anytime if you have questions or just need to vent k?

Your IC, Fibro Friend,