can someone describe your "flare-ups"

[cathyada]

Hi--well I started on "elmiron" and I need to describe what my flare-ups are like--I know everyones are different--
first sign as most of you know is I burn in the urethra, I have bladder pain that feels like menstral cramps and I have lower back pain--I am in agony. I am miserable and burn burn burn--then I have feelings of my bladder feel like its cramping and I just get so frustrated I cry. I also have pain (I think) and the pain is burning. I am right now believe I am having a flare-up--Im having menstral cramps--I had a hysterectomy last Sept--can someone help me with what there opinion is please? thank you Cathyada:pray:

[cathyada]

the flare-ups last about a week--there is no pattern--could be flare-ups every couple of weeks--maybe 2 months go by or more--when I think its over and the flare up is gone--well BOOM--the burning and pain start again--what more can I do??? I just started elmiron--i know it take months to work--I do have pyridium plus--that zones me out --I follow the IC diet--my God what the heck more can I do--Im ready to scream--please someone help me with there flareup explainations--maybe I wont feel so alone--thanks again Cathyada:confused:

[IBNPAIN]

Hi,
I'm not exactly sure what constitutes a flare for everyone, but for me I have constant burning in my bladder and the feeling of urgency all the time. I also get lower back pain, but my pain usually never lets up. So I can't really say what I am having is an actual flare because I have been in pain for so long. I do notice that if I watch what I eat the pain ebbs off a little. It's not as prominent. If I eat pizza or drink a soda it feels like my bladder is on fire.

I also take Elmiron. I have been on it for a little over two months. I can tell some difference in pain from when I started taking it, but I still have pain everyday. I am also taking DMSO instillations and they put me in so much pain the first and second time I took them that I had to go out on a medical leave from work. I have had 9 now, and they are not as bad.

I find that when I am on my period the pain and cramps intensify ten fold, but usually only on the day before and the day I actually start.

I have had IC for over 10 years but was just diagnosed in April. For some reason I was in an almost 4 year remission with no pain at all and then it just came back. The only thing I can think of that may have brought it back on was an anti depressant the doctor put me on. I just keep praying that it will just go away again.

This is a good place for information so you are smart to come here. I hope you get better soon.

Carol

[kelly McC]

My flares usually last about 5-7 days and symptoms include, abdomen pain,burning, feeling of glass cutting uretha,stabbing pain ,pressure,extreme lower back pain,right side flank pain and kidney pain and most of time a low grade fever.
Kelly

[cathyada]

I could just scream right now with the pain and burning--could it be because I had--vegtable soup today and a diet coke and coffee--I think so--Damn

[Marlana]

goodness, I ate veggie soup too. I am ok so far, but I just ate at 7p. est. How long before you usually tell? I gave up all sodas and coffee for 3 weeks now. I have had nothing but water, my tap water too. good luck

[ICLori]

For me, my flareups last anywhere from a couple of months to about six months in length. I never have a short flareup of only a few weeks - oh how I wish!

Flareups for me mean unbearable pressure in my abdomen and bladder. It feels as if someone has raped my bladder with a watermelon and the watermelon baby is growing larger and larger and threatening to rip my bladder apart with pressure and stretching.

Flareups for me mean urinating 40-60 times per day/night, with the worst of it at night. As soon as I stop peeing, that very second, the urgency comes back, the feeling of a bladder more full than it ever was before I got IC. Feeling like I have battery acid in my bladder.

Flareups for me also means mild lower back pain, menstrual-type cramps in my bladder as you describe, and stinging/burning in my urethra when I void and more intense pain in my urethra for a few minutes after each void. There is also a sensation of needles being poked into my bladder from the inside, like a ball full of sharp needles rolling around inside my bladder.

Psychologically, flareups for me mean no sleep, because who can sleep with your bladder hurting so much? No more sleep than ten minutes at a time. It means asking God to either cure me or kill me. It means thinking about how my life is over, how I'm never going to feel better, but instead will suffer this unbearable pain for the next 40 or 50 years with no help. It means feeling like I am a POW in Vietnam being tortured only it's my own body doing it. It means wondering what I did to deserve this, reflecting on all the things I've done wrong in my life and wondering if this is just punishment, and deciding that it must be, that I must be an awful person for deserving this.

It means daydreaming about getting cancer, and forgoing the annual mammograms for the last few years in spite of being high risk for breast cancer, in the hopes that when cancer comes it will be too advanced to do anything about and it will be God's merciful answer to my prayers. It means trying to visualize cancer developing in my body, cradling the cancer cells in my mind, begging them to grow, grow, grow now! It means begging relatives who have passed on to intercede on my behalf with God and allow me to pass on too.

It means being too tired and worn out from pain to even cry anymore. It means not caring about anything else in my life except for my bladder. It means anger that has no target, hatred for my own body, for the doctors who ignore my pain and expect me to live with it, who won't take my bladder out of my body or help me some other way even when I beg. It means anger at myself that I am too chicken to take a knife and carve my bladder out of my body so that I will finally have relief. It means praying for courage to plunge the knife in and carve out that bladder, and not receiving the courage because this pain is God's judgement on me. It means disgust with myself for not being able to do that, and disgust with what I have become.

It means guilt over being a burden to my husband, a worthless person, a person who does not have the right to take up space on this earth but is here anyway. It means sadness for the loss of the person I might have been if only someone had helped me escape the cage of my pain, for the person I once was. Sadness that I wasn't a better person, because if I had been good then God never would have given me this IC and left me in pain.

Blessings, Lori

[curlycue]

:hi: Lori,
Keep on taking the Elmiron. I stared taking a yr ago and I though I was going to die? In agony of this illness. I prayed every night to go and be in a better place than here on earth were I would feel no pain anywhere. I keep on :pray: and finally after taking Elmrion for about 8 months it started working THANK GOD and all the saints and everyone I asked to please:pray: for me so I will pray for you and keep you in my thoughts. Good Luck

[ICLori]

Thank you, Ruth. I'll keep taking the Elmiron but I have a feeling it's not going to work for me. Nothing else I've tried has worked for me, even though it works for most other IC'ers (Elavil) so why should this be any different? And I have a feeling that I will not get any help from the pain clinic too, because God is punishing me for being a bad person. When God has decided that my suffering has been enough, He will take me from this, give me cancer, something like that, maybe a heart attack.

Thank you for trying to reassure me, though.

Blessings, Lori

[cathyada]

Lori--G-d doesnt punish people--no way--you have got to find another doctor that will believe you--dont give up--you didnt do anything to deserve this rotten disease--I am so sad for you--what started out to be a question--am I alone --turned out to be something I am very sad I asked--cause I feel so bad for you--you have from what I can see --a very extreme case--I am so sorry--but please dont think that G-d is punishing you--your not --anymore than I or anyone else in here--my sister suffers from Lupis---terrible flare ups from lupis--she is not giving up-nor does she think she is being punsihed--please dont be so hard on your self--as far as "elmiron"--I just started on it---dont take the attitude that it wont work--nothing else has--I feel your pain--what state are you in? there are IC specialists that I can help you find a doc that will believe you and give you the help you need--I know how it feels to wanna--well--do yourslef in or rip your bladder out--I dont have it anywhere as bad as you--all I can say is that--I will keep you in my prayers tonite--please dont give up--looks like IC comes in all forms in all ways I guess--Blessing to you Lori--you are loved--:pray:

[heiwalove]

lori-
i'm so so sorry to hear about your excruciating pain. i pray and hope you find relief, and soon. i'm sure you have, but have you tried alternative therapies? acupuncture, herbs, supplements, etc?
also, has your IC been this bad since diagnosis? or has it progressed?
again, all my prayers.
~heather
.

[heiwalove]

and lori-
no, no, you DO NOT deserve this pain.
no one deserves such excruciating, debilitating pain. i truly don't believe God (or Goddess, or the universe, or whatever) is vengeful like that. i can't tell you why you're in pain, of course, it doesn't seem at all fair - but pleaseplease don't assume it's because you deserve it. please.
you are loved.

[ICLori]

Thank you so much everyone.

I was just told by someone at the ICA that urologists are very old-fashioned about pain relief and that it's extremely unlikely for any of us to get pain pills from our uros, they just aren't trained that way.

I also got names of some doctors in the DC area (pain docs) that my husband VERY grudgingly (money) said I could visit if Walter Reed doesn't help me.

I've also been reading about Chronic pain. In California, a bill has been passed that makes it illegal to leave a patient in pain. And other states are adopting this bill, and in fact there is legislation before congress to this effect too. So soon we may be able to sue or get into trouble, docs who won't either help us with our pain or refer us to a doctor who can.

I think that in another decade or two, if progress continues to be made at this pace, that none of us will have to be left alone with our pain again. But in the meantime....it's going to be difficult.

Blessings, Lori

[ICNDonna]

When I'm in a flare, I have often described it as feeling like menstrual cramping. It kind of feels like my body is trying to eject my bladder.

I can't eat canned vegetable soup --- it almost always has tomato and that is very bad for me. My other worst triggers are soda pop, especially diet, and coffee, unless it's low acid and taken with Prelief.

One thing you might try is to take about four Tums --- sometimes that helps me --- and it's good for the calcium anyhow, and drink a lot of water --- not all at once, but keep taking small drinks frequently --- sometimes that really gets rid of a flare for me.

And remember:

You did not do anything to cause your IC. And there is nothing you could have done that would have prevented it.

Sending warm healing hugs,
Donna

[Pristine]

I want to see everyone who is going through such pain find a way out of pain and i dont mean by doing something terrible to yourself or anything. I mean this totally from my heart and out of caring and wanting to help people. Please check your diets if you are flaring and recheck them again and again. So many terrible flares are due to a food or drink that is not agreeing with the bladder or some tiny ingredient so small that we overlook it. Pay attention to labels and use common sense about what you put into your body because its going to pass through our raw bladders eventually. I love sodas, crave them even but have not touched one or a cup of coffee since my diagnosis and i honestly believe i'm feeling better because of it. I would love nothing more than to come over here and see you all feeling better. We can cope with this illness even if it is extremely hard to believe when we are in pain so often. Keep the faith.:)
Pristine

[Dixiefireball]

okay let me SCREAM OUT LOUD WITH YOU!!! that is the way my flare up feels like i hate the cramping kind of like labor pains in my bladder with yet stapping pains and lots of lots of burning which i'm having right now:(

sending you hugs and prayers for a good nights rest and a better tomorrow.

[ICLori]

I only wish that my flare would go away by watching my diet.

When I flare, I start eating only bread with butter (toast) and drinking water/almond milk.

Sort of my version of the elimination diet.

You would THINK that would make the flare go away, wouldn't you?

No. My flares still last 2 months to 6 months.

For some of us, being strict about the IC diet STILL doesn't stop the pain and flare. I know that might be hard to believe, especially for those of you who only flare when you eat a "no-no" but it's true.

Blessings, Lori

[ad8123]

Tonight I am in the ongoing flare that I have had since diagnoses in October 2003. For me I call it a "flare" when the pain is so bad i have to rock or pace or scream or cry, when i wake up from my sleep with teeth clamped down and fingers dug into the bed my or my hands.

I live with constant pain, and I just started seeing a pain doctor (1 week ago) and will be returning in another week to tell her it is not working and has in fact coincided with a worsening of symptoms.

The IC diet has become a joke with me and my husband I hurt so much anyway that it just doesn't matter.

My pain is hot and burning in th bladder and urethra. My lower back just aches all the time, when it really gets going my bladder spasms so hard you can physically see it, then I start peeing out cloudy and bloody (usually orangeish) urine. Sometimes I pee every ten. min, but sometimes even in a flare i can go an hour or more, peeing does NOT relieve any of my sypmtoms anymore.

Since being diagnosed I have begun reading the Bible, God does not use sickness to punish us, our bodies here on earth are simple mortal and fail but one day we will walk in the Kingdom and be without pain.

I understand. Ic can be terrible, unfortunatly you and I got that kind, but have faith in the Elmiron-if it does not make you sick it wil probebly help a lot-and by the way a lot of us can not take elavil and please go to a pain md you need pain meds nothing else touches this time of viseral and nerve pain.

[ICLori]

Thank you, Angela.

I am going to a pain clinic but they can't get me in until 27 July and I was only given 25 Percocet to last two months. I've used some of them so I think I only have about 15 or so left.

So I have to decide, which day do I want 4 hours of relief on? Or do I use it to give myself like 3 or 4 days of continuous relief, then suffer again with no help until 27 July?

It's unfortunate that most doctors frown on giving out pain meds.

My uro made it quite clear to me that he disapproves of taking pain meds on a regular basis. He said it's okay to use occasionally if I'm having a really bad night but certainly not for long and not on a regular basis.

So, since I know that this is all I get until July 27th, mostly I have to suffer.

Today is a bad day again. Yesterday I was getting a little better, today I am worse again. No rhyme or reason that I can tell.

I am getting tired of this flare. I know you are getting tired of yours, too.

What medication are you taking that is making it worse? For me, any of the tricyclics make it much worse. Is that what they started you out on?

Hope you feel better soon,
Blessings, Lori

[sedavis]

My flares usually last 7 to 10 days. They have changed somewhat as now they start with some kidney pain and the the frequency and genital pain. Usually I can find something that I have added to my diet that caused it. Lori, I too live in the DC area. If you'd like to talk you can e-mail me at sedavis@erols.com or I will call you. There has to be some relief for you. Sue

[ICLori]

Thank you so much, Sue...I just have to hang on until July 27th. Or maybe somewhat longer, because I heard they don't give you meds or anything else to help you the first appointment you have at a pain clinic. Not sure if that's true or not.

If Walter Reed doesn't take care of me, hubby agreed we can pay out of pocket and go see a civilian pain doc - I got a list of good pain docs known to treat IC from a nice lady at ICA...I can forward the list to you if you'd like, if you aren't happy with your current treatment right now.

For some reason, after I took a nap this morning, I am feeling better. Sometimes I think it has more to do with my back than anything else, does that sound weird? Like if I sleep in a certain way on my stomach with pillows underneath me, sometimes it sort of stretches my spine out and then my IC is better. I wonder if IC and the lower back are connected somehow?

Hope you are having a good, pain free day,
Blessings, Lori

[sedavis]

Lori, you shouldn't have to suffer like this for another 5 or 6 weeks. They should give you something now. Have you tried going to the ER. that's where I ended up and got diagnosed. I do have a doc that's been very responsive to my needs and I had pain meds right up front. No one should have to suffer. Please let me know if there's anything I can do. Sue

[ICLori]

I'm so torn - on the one hand, I really want relief, on the other hand, I'm terrified I will be labeled a drug seeker. So I think I need to just hang in there until I get help from a pain management clinic. Hopefully they will give me enough meds that will take care of me around the clock. I've heard if you get labeled a drug seeker, you will never get any more pain meds, whether at a pain clinic or emergency room or anything. So I feel like I have to be very careful, you know?

I have decided though if I run out before July 27th I will ask my husband to call my uro. Maybe if he calls, I won't be labelled a drug seeker, I am hoping.

Blessings, Lori

[Pristine]

Just thought to mention both butter and margerine flares me. I stopped eating it ages ago and felt better for it. Many margerines are loaded with soy products and butter has salt. Salt can be a huge IC irritant. I never salt my food any more unless its with sea salt.

[sedavis]

I'm continuosly amazed at how different we all react to different foods. I guess it is truly trial and error. Of course most of us are afraid of the error part. Sue

[ICLori]

It is pretty amazing!

I find that I can tolerate many of the no-no foods on the IC list, I'm just very sensitive mostly to liquids and medications for some reason. There are very few foods that set me off - just the usual fruit culprits, including grapes, and I can not eat raw onions either for some reason, but most everything else I really can not tell that they are causing me any discomfort. It's easy to tell with fruit juices, soda, medications - instant discomfort - but when you eat a food and there is no increased discomfort whatsoever in the 12 hours or so after you eat it, I just figure that that's not a no-no food then for me...maybe others would disagree.

I guess most people's flares must be set off by eating something wrong, because I notice the advice for most flares is food oriented. I find that my flares come on more due to a lower back injury, or medication I am taking, or intercourse, and not from what I am eating or drinking. I do sometimes get very transient discomfort, say, if I have some soda, but it goes away quickly and never turns into the months long flares that I get. And for me, although I naturally restrict my diet during flares because who needs more discomfort, restricting my diet has no effect whatsoever on how long my flare is going to last or when it ends.

Blessings, Lori

[sedavis]

I'm due for a pap smear and I'm afraid it will cause a flare since sex is a no no. Has anyone else had experience with the pap smears? Sue

[amaris]

sue i sent you a pm

Amaris

[sedavis]

Thanks so much that was a great help. I'll print it and take it to my nurse practitioner. Sue

[plaedes]

i have had IC since august of 2002 and i have already seen many changes. I am on elmiron and it helps. i stopped taking it for a while, so i know it is helping. it just isn't enough. somedays feel like i have molten lava flowing through my pelvic region. other days just feels like i've been trampled to death. periods are the worst because i have the lava, trampling, and spasms. i can relate to the ball of pins rolling around feeling although not as often. then every once in a while i get these cramps that feel like medieval torture. it is like i am being dropped on a pike that is big enough that it is going up my vagina and rectum. when that feeling subsides it is followed by this yanking sensation on my vagina. in a lot of ways i can relate to ICLori because for the most part my flare's last for months without a single day of reprieve and even when the flare is in remmission there is still pain, it just isn't as bad. i would say it is like living in the desert on the equator and everyday is scortching hot, but some days feel great at 110 degrees because it's been more like 130 or so. i think the body gets used to a certain amount of pain and after a while what used to be severe pain is more mild pain, because you have grown accustom to it. i have been in a flare since the very beginning of march and i've had some good days, but only because i drugged myself to the point of being unable to feel it anymore. well, that is the gist of my flares. i won't go into the mental side of things....not good either.....hope this helps somebody else at least feel like they aren't alone. not much but it is some small sort of consolation to know you're not the only freak in the world with this problem.

[ad8123]

The FLARE!

I am like some of you out there always in pain, a flare is hell ontop of hell. I have tried a lot of medications many have made things worse or quickle become new allergins. The diet has little effect on me unless it is a good day, then I might notice a bit more tingling, however i can not tolerate oranges or cranberries but 1 soda is fine. I still do not get that.

I started on elmiron, had constant diareha, lost my hair in patches.
Then I tried elavil, my uro kept upping the dose to try to get me to sleep finally i was a zombie and gained 30 pounds and did nothing but sleep and hallucinate.
My urologist started me on Vicodine, it worked for about 2 months then he put me on ultram, we increased it untill i was (and am ) on the max dose he can prescribe.
We added Hydroxyzine hcl (atarax) 75 mg a day, that finally took away the burning in the urethra and the feeling of tingling-pins in my bladder.
My uro gave me valium at my request for bladder spasms and so i could attempt to have sex again-that helps a lot anywhere from 2 to 5 mg depending on how sensitive you are.
My uro tried me on Paxil, i do not know what it is doing but it does not hurt so i just keep taking it.
Initially I took zantac 300 mg to keep the stomach under control but after so many months the uro said he could not prescribe that anymore- i needed to see my primary so the month i waited i got soo much worse pain increased nausua with each does and complete loss of appetite, constant stomach pain.
At this same time my uro said i needed a pian md now this is where it gets good
The Pain MD, treated my within a week of caling and gave me new meds the first visit_Problem she only has one other IC patient. She wanted to get me off the hydroxyzine HCL said it may be too acidic, i listened, i got worse after one week my urethra burnes so much i can hardle move and forget going pee. I started it again yesterday and by my third does I am burn free-although still in pain.
She put me on oxybutynin (ditropan)! A BAD thing for me, it is making me so dehydrated that when i want for my blood work the nurse almost refused to take it and they had to use a special needle to get it my veins were so small (not normal for me at all) it also caused retention -that is I COULD NOT pee, and my bladder just kept getting fuller etc. So i called the nurse (the md) is on vacation and was told to stop immediantly.

Now, what she has done that helped, kept me on the Ultram 4x aday, and added a lidoderm patch 2x a day (works very well on the bladder not at all on the low back).

I got to see her wednesday and I am asking for my hydroxyzine and valium back to the previouse doses, and i still need a long acting pain med that will not leave me in agany every three hours ( i get 3 hours of some relief, 3 hours of hell all day long)
The sleeping pill temampezam ? has helped a lot I am sleeping pretty well and only take one nap a day (still it is at least 2 hour long)

That is my story

[cathyada]

My God--you poor poor thing you--I feel for you and the others who have posted here. I have had some luck with pyridium plus--although it makes me like a zombie--I take paxil, zyprexa and xanax. thats for anxiety and it sure does get worse when i have a flare-up--today I am not having any burning--shhhhh the day is young yet. thanks Cathyada

[Pristine]

People with chronic illnesses should never refer to themselves as freaks because thats just the sort of shallow talk we all want to stop. We are all just human beings with a health problem and that is the extent of it. If someone is calling someone a freak then its the person doing the name calling that is the ugly one.

[sedavis]

I sometimes think we're harder on ourselves than others are. I have met with nothing but kindness and concern. We've met several new friends who have invited us to dinner and when I tell them I have a few dietary restrictions they are more than happy to accomodate. My favourite little restaurant even tells me what on their menu that's IC friendly. No one who is ill or has any kind of handicap is a freak. I feel so bad when I read these messages from truly desperate people and wish I could be more help. Sue

[HeatherMac]

Hi there
A flare up to me is when I go to the bathroom every ten minutes... The urgency to visit the girl's room is overwhelming.. The thing is the more i give in to it the worse it gets..
i also have alot of kidney pain which my doctor keeps telling me is from the bladder. Does anyone have an opinion on this?
Also pain in the abdomen.. and the bloating feeling is present ..

[Pristine]

The pain is most definately all connected. When the bladder flares up then the kidneys hurt because the ureters connect to the bladder. They actually can spasm or get banged around by an upset bladder or also by IBS or any other tummy problem. The first thing i did was panic when i felt kidney pain but soon found out that its not necessarily some dire health problem lol. In my case since my ureters have been re-implanted due to a physical handicap i was born with, they really feel IC's every bad reaction or move. So i have to fight through any pain i get from IC or find something to take my mind off it and it usually passes easier this way and feels better.

[blue]

I want some vegetable soup! Yummy! PAINFUL, OWY!

[sadbladder]

Pristine,

Can you explain what you were born with that made you require surgery to re-implant your ureters? Excuse me for prying and if you don't want to explain, I'd understand. I'm curious because I have a duplicated right collecting system (two ureters) and most of my pain is on my right side...along with bladder and urethra, of course. I never feel any pain on my left side. I'll be talking to my Dr about this abnormality maybe being the cause of my right side pain in a week.

Thanks for your time and I look forward to talking with you!

Sadbladder

[HeatherMac]

I found this interesting Pristine.
I too also 99% of the time only have pain on the right side and always wondered why...
The bulk of my pain is in my back at the kidney on the right... and sometimes in front on right... and rarely around the belly button area.. it can also be tender to touch on the right hand side on the front...

[HeatherMac]

I found this interesting sadbladder..
I too also 99% of the time only have pain on the right side and always wondered why...
The bulk of my pain is in my back at the kidney on the right... and sometimes in front on right... and rarely around the belly button area.. it can also be tender to touch on the right hand side on the front...