constant flare no matter what?

[kylee]

I have been in a continuious flare since September meaning I have had constant bladder pain 24 hours a day and at times during the day the pain is agonizing leaving me rolled up in a ball crying.I have tried various meds and installations and cannot take Elmiron so I am left with taking Ultram on a daily basis which helps take the edge off for at least a while.I do follow the diet as well and have invested alot of time with it so I know that food is not playing a part in my pain. My question is...Is this a 10 month flare? I never had pain before just frequency for 30 years.. can a flare last this long and am I doomed to live like this forever on pain meds? What causes the bladder to hurt constantly and has anyone had the problem of just being in pain all the time no matter what they do or can it simply go away just like it came?/ I am sorry for all the questions but I have missed out on every social event,kids functions at school,weddings,graduations,movies,and daily living for almost a year because of my bladder and I am losing hope.....HAS ANYONE BEEN ON PAIN MEDS DAILY FOR LONGER THAN A YEAR AND BEEN ABLE TO RETURN TO A SOMEWHAT NORMAL LIFESTYLE?

[mela414]

Hang in there. flares can last a long time. are you seeing your uro? Have you tried pyridium. am in a flare myself right now and take ultracet frm the pain but have found that taking pyridium 3 times a day along with an ativan it seems to calm thing down for a little bit. of course when the pyridium wears off the pain starts to return so I don't let them happen. I'va also been getting weekly bladder instillations but they only help for a few hours. I've been doing a lot of research and am going to change my bottle water and probably try aloe vera.
this is a good palce to come to for information. I have been learning so much and the people on this board are so caring and helpful.
hang in there. you will ride this out and find the right balance for you.
make sure you call your uro and keep him/her up to date with all your symtpoms as things change.

[ICNDonna]

How did you react when you had a hydrodistention for diagnosis? If it helped your symptoms then, it just might again. And --- the eternal question --- are you drinking an adequate amount of water? That can be extremely important.

I hope you find some answers soon.

Donna

[emilyrose197377]

you can try uristat it is an over the counter bladder med like pyruiduim and it numbs your bladder. It might help you to take that with your ultram. I was on ultrram a long time ago it never helped me much. good luck to you. I hope you feel better soon.

take Care
Kim

[Portia17]

Percocet, Zanaflex, Klonopin , Neurontin, Tens Unit, Dmso Diet Helped Me

I Had Pain Since November 2004 And I Am About 95 Percent Free Of Pain For Over A Month Now - Ist Time Ever- So I Guess Remission And I Have Not Even Taken Much Of The Meds Anymore Just Pop Maybe One Percocet A Day

So There Is Hope

[southerngirl]

I've had pain almost every day since june 2003, usually I wake up feeling okay and then by afternoon and evening I'm in horrible pain. Sometimes the pain is in the abdomen, somtimes it's burning and sometimes its both. And the frequency has been around my whole life. I've been on pain meds almost every day since that time. The meds I'm on now have helped the abdominal pain some but not the burning--I take Neurontin, Norco, Xanax(just sometimes), I also have a TENS unit and Lidoderm patches. My doctor at the pain clinic is the one who got all this for me. The only doc who has helped me, (Not counting my uro who tried but wasn't able to figure out anything-he sent me to the pain clinic). Try going to a pain clinic if you can, it is so nice having a doctor who understands and whose objective is helping with pain in any way possible.

[mela414]

HI Southerngirl,

What is Norco? I was on Neurontin in the past and tolerated it OK but then stopped it for about a year or so. When i went back to it I couldn't tolerate it. It made me very dizzy and weird so I stopped again. About a month ago my uro wanted me to give it another try and the same thing happened...it actually made me very trembly and depressed about 2 hours after taking it.......crying and all......so again.....I stopped it last week. How much neurontin are you on daily? I am looking for somethng else to take....never heard of Norco.

thanks

[ese]

Norco is hydrocodone with 325 mg of Tylenol - All it is is Vicodin without as much acetemephin in it. For whatever reason, Norco helped me much more than the vicodin.
Kylee - I've been in a continuious "flare" since my symptoms started almost 4 years ago. There are times when it's worse than others (like late afternoon and right before my period and when I eat or drink certain things). The best advice that I can give is to watch your diet and keep your meds in you. How much Ultram are you on? If your Dr oks it, you can take up to 50mg every 6 hours. You maight want to ask for something stronger, like Norco or percocet. I've had better experience with the Ultram, even though it's not as strong. Taking it every 6 hours actually helps with the pain and frequency more than when I was on Duragesic and hydrocodone together. I hope you find the right combo of treatments to help you. Hang in there! As stupid as it sounds, I try to tell myself that we're going through this for a reason. And, one day we will know why. I'm sending hugs and I hope you feel better soon :kissing: .
Ese

[southerngirl]

Hey Mel,
I'm on 300 mg of neurontin 5 times a day.
And Ese explained the Norco--it's a pain pill. It has helped a lot with pain. I usually only need to take one, but if I'm having really bad burning I'll sometimes take 2 and that takes care of the pain. Also, if you have abdominal pain -have you tried a TENS unit? They are great also--I put mine on my abdomen, back and even my legs (I have fibromyalgia also and have awful pains in my legs). I also have an emergency supply of xanax, to help me relax when I'm in pain.
Not much worked for me until this so I don't have a lot of suggestions.
As for the side effects to the neurontin, the only thing I noticed at first was feeling sleepy. But I have noticed lately that my vision is a little blurry after I take it--not real bad but if the captions are on the tv (my husband likes the captions on, because he has trouble hearing out of one ear.) they are slightly blurred. And I have also noticed a little dizzyness, but that is mostly with the last two pills because I have to take them close together. I try to space the rest of them out--like I take one at 9am, one at 2pm, 6pm, and then 9pm and 11pm.
I hope you can find something that works for you. I know how frustrating it can be not having anything to help. Keep in touch and let me know how things go for you.

Susan

[marye]

Kylee, have you had a cysto since the flare started? When that happened to me after 30 years, there were new problems, I had a fulguration that burned off the worst of the bladder lining and it helped a lot. Can totally sympathize, I know what it is to miss things.

[Regina06]

I take 1800 mg of neurontin a day with no side effects - just good things and percocet works wonders and dmso and tens unit but lately as for the bladder dept I have been feeling really great. It takes sometime to get it under control but it does happen

[mela414]

I am almost thinking of giving the neurontin another try and giving it a little more time for my body to get used to it. maybe I stopped to soon......I don't remember all these side effects when I took it a few years ago.
I'm having an instillation on thurdays and will discuss other meds with the Nurse Practitioner.....who is great with IC meds and diet.
Still trying to work out the diet kinks. it seems like everything just gets more difficult.

[bunnykinb]

I was given 600 mg of Motrin which does nothing for my flare being that of urethral burning. I was also given Vicodin, but that only helped with pelvic pain. The pyridium does nothing for me now. I been having to take Urimax which turns the urine blue. It takes longer to get through your body, but it helps me better. I also take Urocit-K and Atarax which so far has done nothing. I asked for an instill, but I guess since I have been seeing my new uro for only a short time, I have to go in Thursday. Ugh, ugh, ugh. I seem to alternate between urethral burning and pelvic pain. Both are present.

bunnykinb

[mela414]

Hi bunnykinb,

I wasn't able to take ibuprofen as it made my bladder worse. At first, I took Advil Liquid Gels for my back and thought it was great in relieving pain but by the second dose it destroyed my bladder! I remember waking during the night with horrible pounding pelvic pain.
just a thought....could it be that the motrin is irritating you more?

[sunnidee]

I have taken Elvail for the past fifteen years, and wish it could help others as well - I tried Elmiron for 9 months and did not make much difference - my hair started to fall out also. I still get flares and they get worse in the afternoon, but it is nothing like the pain was in the first few years. I can go months without a flare and now it will hit me late in the day towards supper. I take 20 mgs of Elvail at supper and by 7 or 8 the pain has gone away and stays away until the next morning. I find the best thing to do for a flare is to drink lots of water and lie down..

Hugs :)

[Pain]

As I posted in a few other threads...some of us have 24/7 horrific pain and there is no "flare" about it...unless this one I'm on, over five years with not one day of relief is still a "flare". Long acting pain meds is all that works and they don't work all that well. I hope you don't end up like me : (

[theoutlaw77]

I too have constant pain. For the longest time, I only had urgency and frequency. I did have pain now and again,but it always went away very quickly. My constant pain began last Oct., and has not gone away. That is what led me to my quest to find out what was wrong with me, and what led me to my dx of IC. I too wonder if this "flare" or whatever it is will ever go away. Will I have to continue to take percocet on a daily basis forever? I have only been taking the Elmiron about 2 1/2 months, so I guess that it has not had time to "kick in" yet. I have tried bladder instills and a hydro/cysto. Neither did much for my symptoms. I also take hydroxyzine. I do think this has helped some with the urgency and frequency. But, still the pain remains...

[evanseri]

I also like Evail. When my life became rather stressful I had a huge flair that lasted two months and for me that is a long flair. I was desperate and did tons of research. I was already taking Elmiron and then started on my evail again. I also tried a product that I read about on this site, cystaproteks (spelling?) and cystaQ. I began with the cystaQ and my flair really died down. I think that these products are similar to Elmiron in that they coat the bladder without the side effects, so maybe they could work for you. These products also have anti-imflammatroy properties and I feel that is another reason they work so well for me. Hope you find relief! :) Remember; this too shall pass. Erin