Who has everyday pain?

[Freckles]

Hey yankee,
I haven't been to the boards in a while and so sorry to hear everyone's pain. I've had the disease as well of about 9 years. I'm 47. I have finally found my favorite medication and I have been on them all. Codeine helped a bit but made me the ***** from hell. I used to tell my doctor it was the medicine and he said that was impossible, funny how my demeanor changed when I quit taking it. I then went to demoral which made me very sick to my stomach all the time and made me lose my last job. I've been out of work a year and still trying to make things work. I don't want to be disabled, but think it's got to happen if I want to keep my house. I graduated from demoral to morphine which I hated even though it did help the pain a lot. I am now on fentynl patches. I have pretty much taken myself off of every other drug such as neurontin, elmiron, and a couple of others due to the fact I can't afford them. If my doctor knew he would throw a fit, but if I can't buy them I can't buy them. I have to keep the one that helps the most and thats the patches. They help the pain but nothing takes it away. I'm fairly sure my days of working are over and that just kills me. That's the most painfull part of this disease for me. I'm a social butterfly who can no longer fly. It's devastating.
Karen

[Freckles]

Jen....
find yourself a good pain clinic. Do not live in pain. It's hard to find a good pain doctor but it's worth the search. I'm so sorry you're hurting. I know beliveve me I know how it is.
Karen

[jen74]

Hi Karen,
Thanks for the advice. I am going to look into getting into a pain doctor, but I think I need a referral to see one, and God only knows how I will get a referral as I highly doubt my urogyne will refer me to one. She does not even believe in giving pain meds for IC. I may just have to try and see my pcp and see if she will give me a referral. Thanks for replying and for the advice.
Jen

[MakinIT]

I just don't know why this continues!!! Jesus...pain is what IC is, whether it is the mild discomfort of mild IC or debiliting pain of severe IC. I finally "won" my social security case in November and the judge actually apologized to me for making me suffer so long. There is always some sort of pain that needs to be addressed. I am constantly on Morphine ER(and my bladder doesn't "look" bad, but I have a very high mast cell count and can hold very little urine) and generally have to take 35-50 oxycotin 5mg pills for breakthrough each month. I also have the stuff that turns your pee orange, which has turned out to bigger blessing than I thought. I take 15 mgs of valium each day to allow my bladder to relax enough (and my adhesive tissues in my tummy) so I can pee. I also take Topamax for nerve pain and anti depressants. I was against all this to start with but I became so desperate for relief....My pain doc tried nerve blocks, epidurals, other such things. He tried to implant a stimulator and it just sent me into spasms (talk about pain...I think my toes touched my head from the back everytime he attempted to find the "sweet spot") On top of all this, I've just been diagnosed (like 3 days ago) with Rheumatoid arthritis. I had some hope I might work again. I have a Master's degree in teaching special education kiddos...I am absolutely disgusted with myself and angry. My family has been less than supportive now with this new diagnosis. It took me 3 years to finally get my husband to understand IC and our marriage was just becoming "normal" again. this new diagnosis, he is withdrawing from me and my 17 year old thinks when I say "I'll need a little more help with some things involving housework" I mean she'll be strapping on an apron and a feather duster and spending her freetime doing the housework. My husband and youngest spent the day in the yard, I mopped the kitch, bathroom, cleaned the bathroom, did laundry, swept the entry...changed the youngest bed (because she was working so hard outside), and dusted and the eldest threw a fit because she had to vacuum the front room, hallways with pet deoderizer. She refused to do anymore because she had a date. My husband was furious with me because I did all that work and he felt she should have. But he would have been ****** if he had come in and it wasn't done. She's 17. damned if I do...But she didn't get any money for the night so that made her angry as her sister was given a 10. The only thing my husband said was that I shouldn't do all that work and he had talked to her the night before about it...(Thus, the communication continues it openess...not.)

I guess from what nightmares I read I am lucky in that I have such wonderful docs. My husband got angry yesterday and told me I needed to get doctors closer to my home. (I see docs about 20-40 mins away dependiing on traffic, and my meds make me sleepy) But there are very few that I would trust like I do the ones I have now. My GP is wonderful and completely trusts me. It is stories like yours that scare me.

Good luck to you all.

Tracey

[Sharyn]

I took Atarax for the first time tonight and had a reaction to it. I became very flushed and had a prickley feeling. I called the AARP nurse and she suggested that I not use it again. Has anyone else had this reaction. I use Vicodine, but wonder why Percocet is now the med of choice.

[MakinIT]

Hmm...odd rxn...I took Atarax for a loong time but I stopped b/c I was trying to cut down on exhausting meds...Atarax is like an anti histimine, I believe. You are generally scribed it if you have mast cells in your biopsy (the type of IC that shows you have auto immune, so you have a high level of luekocytes? that are IgM type...I think...those are the ones that cause an allergic reaction and make your bladder crazy if you have that type.) Vicodine is a fine drug for pain. It may be all you need and that's good. Stay with that and use it when you need. Percocet is a stronger version...has more morphine. So Docs prescribe that for many of us and that is what is used either for pain relief or for break through pain. (like, I take MS contin Extended Relief...means I take 150 mgs every 12 hours to keep a constant dose in my body.) But sometimes the MS contin isn't cuttin it and for some reason my pelvis is just going bananas so I have to take something for breakthrough. (I take Oxycodone). Yes, I have a rather high medication (narcotic) load but it has taken 4 years to get to this point and I fight every increase. I haven't had an increase in long time....(well, I did in November but prior to that it was 2 years).

Look up the meds, it is interesting and you go into the doctors office with your eyes open a little more. : ) I hope you don't need anything stronger than you take. Look up atarax and see what alternates you can take, because that is an important drug if you don't have other meds or vitamins/supplements to help you keep it that bladder calm.

Tracey

[SandyRN]

MakinIt, percocet is oxycodone with tylenol...not morphine. I'm thinking you knew this and just typed it wrong, but wanted to make sure other's knew the difference.

:) Sandy

[MakinIT]

Yeah...I did...thanks for pointing it out. Brainfart.

Hey...I see you take prednisone on a regular basis,,any issues for you on that? I become a raging maniac (and fat to boot....think Incredible hulk with the wieght minus the muscles and double the rotton and unpredictable mood) I've tried to put a new antidepressant into my regimine but I started gaining weight immediately, despite my daily workout at the gym. I can't gain weight b/c I have type ii diabetes and if my weight stays in the normal range I'm cool.. I don't have to worry about a thing. But, If I get above a certain point its finger pricking time.

I'm ready for the trade in on my body. where's my new 20 old body with perky, uh, bosoms, tight abs and gluts, and a muscular body that could win tae kwon do competition: Now? ugh. Nuthing. L.o.L.

have a good day

[chris0710sct]

I am on 15 mg of morphine up to 4 times a day even that does not make me pain free. I work full time it helps take the edge off

[Moonheart]

Tracey,

Do you have more info on the autoimmune type of IC and all that you were talking about? I was given Atarax and I had my urine tested this week and it was positive for leukocytes. My bladder is a raging beast ALL the time, so does that pretty much show between those things that it is for sure autoimmune? PM me please k? Tnx.

[KPearson]

For me the pain is everyday to I pray for an hour of relief I take lyrica,MS contin & percocets. It will take the edge off thats all. My worst is riding or driving in the car or walking in stores actually ant activity will create more pain. I don't know how the mother's of young children do it your in my thoughts all the time since my granddaughter was born last year I realize the impact of this disease and the sadness. well I guess that should be another post but I had to mention it anyway. But yes pain is part of our lives now and no one understands but other IC patients.

Hugs,
Kim

[JudyS]

Hi Everyone,

It's been a long time since I've been here and posted anything...I got very discouraged with anything related to my IC. I spent the first 5 or 6 years after my diagnosis chasing after any treatment options that were offered to me. I saw IC specialists, pain specialists, alternative practitioners, etc, etc. I even got a spinal cord stimulator implanted (which helped a bit, until the leads shifted out of place and my insurance company wouldn't pay to fix the problem :( ). I did learn that riding motorcycles helps with my bladder for some unknown reason....the constant vibration numbs the perineal area and blocks the bladder pain temporarily. It was a huge godsend, and I rode all the time, because it was the only activity I could do that didn't worsen my pain. Unfortunately, I have 2 degenerating discs in my lower spine and these days the same vibration that helps my bladder cause my back to flare up. :( So now I'm existing on massive opiates (80mg Oxycontin-4/day with 4mg Dilaudid for breakthrough pain). I have been on this same dose for more than 5 years and haven't increased, although it has gotten less and less effective at managing my pain. I refuse to increase, though.

We just moved from Sunnyvale, CA to the Minneapolis area and I had to go through the excruciating process of finding a new doctor. I loved my doctor in CA....she trusted me and treated me with compassion always. In my experience, that is very rare. Since I've gotten here to MN, it took me 6 tries to find someone willing to treat me as anything other than a "junkie looking for drugs". After the 5th attempt, I was so depressed about the whole thing I told my husband that I was sick of the whole process. Even with the drugs I'm taking, my pain is usually still about an 8. I decided that I would titrate myself down off the meds completely and just live with the pain; the judgment and difficulty in getting the meds just wasn't worth the little benefit I got from them. My husband wouldn't accept that....he knew that if I did that I would have absolutely NO quality of life whatsoever and he couldn't stand the thought of it. So he dragged me to one last doctor on Friday. I had told him that if this one was the same as the last 5, I was not going to another..... Anyway, I explained exactly how I was feeling to this doctor; that I was sick and tired of the whole thing and just wanted off the meds. He was extremely sympathetic and vowed to help me find some sort of solution to my problem. He sent me home with new scripts for all my meds and a referral to the MAPS pain clinic, where he thinks they can help me find some alternative pain management therapies.

I'm sorry that I've been rambling on and on....the main point of my post is that this disease can really take its toll on one's psyche: between the constant pain, judgment, etc from doctors and even friends, and trying to find something at all to help.....It's been 10 years since I was diagnosed (and 10 years before that experiencing ever worsening pain that doctors couldn't explain). I had a lot of fight in me once.....it gave me the strength to keep searching for an answer to my pain and after I got the answer, to keep searching for a treatment which would give me my life back. For the last few years, however, I've lost a lot of that fight. My urologist told me that there wasn't anything else I could try and that I would just have to resign myself to what was left of my life.

But after talking with this doctor on Friday, I feel a renewal in me desire to fight. It's amazing how much a compassionate caregiver can do. I just don't want to give up.....no matter how many dead ends I end up on. :)

[hottytoddy93]

hi Judy,

i was so moved by your post. i have been there, on the "chase" and trying everything i could. i know exactly what you talking about. i have been fortunate to overcome a lot of the pain after a year and that Elmiron is working well for me. but i know that one day it may not work, or i may have to find a different medication or treatment. i fear going back to that hell on earth. i still suffer with the severe depressions and usual dsythymia (constant underlying depression) that IC kicked in full force. the mental pain is just as crippling, as you know. don't you hate having to take narcotics? i sure hated it. and then for drs to act like you want them to abuse them! OMG the only "abuse" of narcotics i may be accused of is throwing them across the room! i feel like saying to those kinds of drs "sure, i bet we all just LOVE that constipation, constant lethargy, and slight amnesia!" i know what you mean about taking the least amount of pain meds possible just to get by (maybe with a 4-5 pain level at best, usually around 7-9).

i thought your post was very positive even with all you are going through. you hang in there. also, my physiotherapist helped me immensely! do you have one? i had bad PFD and she taught me methods to decrease spasms and ease the tightening. she had lots of IC patients. it really sucks feeling like you are just here on earth, not living, just existing in indescribable pain all day everyday. the IC cripples us physically and emotionally. then the stupid pain meds numb our minds, but we have to take them even to tolerate just lying in bed. i hate not recalling conversations with my child and husband. it is just no way to live.

when you don't feel like going on to the next dr or treatment, you make yourself go because it just may be the one that works! refuse to let this disease beat you. my belief is that we are the ones God chose to tell others about IC and to help find a cure. we matter so we can't give up. we are here to help others. so keep posting, emailing everyone you know, and talking to drs and everyone about IC. that is the way to the cure. i believe i will be here for that day. i really do.

Lauren

[gtg728]

Judy, Your thread was just what I needed to read tonite. I have been diagnosed since 2001. I too used to have alot of fight and now the pain is changing and increasing so that I am definately loosing my punch. I keep telling myself that the meds need to stop and when I try the pain escalates,this disease is a strange one. It truly impacts every aspect of your life.

[VCNJ84]

I've just gone through pages of your stories crying my eyes out!!

I wish I could hug each and every person in this thread.

I have been dealing with non-stop pain for 2 months straight and I feel like my life is being ruined.

It's so consuming...I am still undiagnosed with exactly what I have....so I have the added stress of not even knowing if I am treating it correctly.

It's only been a few months and I can barely cope. It's ruining my social life, work potential etc. I don't know how you ladies have lived like this for years...the fact that you continue on and try to over come is inspirational.

I think ANY chronic pain is horrible...but I think vaginal and pelvic related pain has an added stigma. It's embarrassing to talk about and it's hard to find sympathy or compassion from non-suffers b/c you look healthy in your face since you don't have a cold or anything. If you break a bone or have certain other illnesses people seem to get that you can't go on like normal...but I feel like I have to suffer from day to day pretending my womanly region doesn't hurt.

This forum is a great place to find people who understand what it's like to suffer in silence. :angel:

[Mrsrea]

just real quick since I am new to this board. I havent posted my story yet because its crazy long. I have been in constany unbearable pain for 7 years now! I just got diagnosed last week. I had surgery this week but im still so confused with all this information. I take about 6-7 10mg of lortab a day to just get by and Im still in pain! Im just in the beginning of this process and really its so much information to take in!

[kerr4274]

I understand what each of you are going through. I was diagnoised in September with IC. I did good for awhile with the pain but for the past 3 weeks I have been in constant pain. It is effecting my job performance, my family life everything! Last weekend I had to go to Valdosta Ga to see my daughter I was able to sleep the whole way there...3 hours. I had to drive home and thought I was going to pass out due to pain. I take tylenol like candy right now during the day and my loratabs at night just so I can get some relief from the pain. Will it ever end? I have been getting depressed lately and I do not like that ..I had sever depression several years and do not want to fall back into it but I see it comming.

Are there any pain medications that knock us out that can be taken duering the day? I take ultra C but the pharmancy said it was discontinued so they are trying to find something my insurance will cover. I work full time and go to college along with having 2 teen age children in my home...I want to be able to do fun stuff with the kids but when I am on my feet too long I hurt worse.

[Briza]

I have not read all of the posts in this thread but original topic was "who has everyday pain?"
I did first 18 months but with time, diet, appopriate drs, adequate treatment I eventully reached a point where pain rarely occurs daily, and none of the other IC related symptoms are present....with or without treatment,

[BT2008]

Are there any pain medications that knock us out that can be taken duering the day? I take ultra C but the pharmancy said it was discontinued so they are trying to find something my insurance will cover. I work full time and go to college along with having 2 teen age children in my home...I want to be able to do fun stuff with the kids but when I am on my feet too long I hurt worse.Hey Kerr4274,

May I suggest that you open a new thread with your question (you can just copy and paste this post in a new one) so it will not get lost in this ongoing old thread? That way we can all chime in for you specifically...

~Beth
:)

[BT2008]

So far, I have not had a totally pain-free day in over nine months. But, with my regular instills twice a week, my current pain med treatment being titrated every month as we seek to find the right strength and dosage, and following a very strict IC diet, I have a lot of hope that I will have a lot of pain-free days--sooner rather than later!!
:pray:

~Beth

[katie87]

well, my bladder has always been "shy" and easily irritated, it became severely painful at age 16, probably because I started drinking alchohol on the weekends, having a sex life (gasp!!!) and drinking coffee... after having severe pain for 4 years, i was diagnosed.... I have stopped the alchohol, the sex and modified my diet. now 5 years later, and one daughter who I had in 2006, and my pain has not dropped lower than a 6 in almost 3 YEARS... I just got down to a 6 a few weeks ago, and sadly it isnt often , my usual pain is 7-9. I am not a wimp, and i know it.... I try not to use the higher numbers of the pain scale, but I am genuinely in 7-9 pain, I have always had WBC in urine, and mircoscopic blood and sometimes visible blood and always visible puss. I am not able to work right now and I am not collecting anything... I am hoping to get this pain under control, it is a CONSTANT pulsing pain like a throbbing heartbeat in my low pelvis (assuming bladder) which feels like it was ground in a meat grinder and doused with rubbing alcohol. I also have tailbone and urethral pain and burning, severe pain and spasms after penetrative sex. I can echo others concerns about feeling like you look normal, no one believes the pain I am in because I manage to care for my 2 year old, but it is truly a struggle and I have no choice because she needs care, so i have to do it no matter how bad the pain is. It is an "embarrassing" problem, no one understands what the pain is like.... no one... unless they have IC.... I had 1 UTI, coincidentally the START of my IC, and it was severe to the kidneys pissing blood, ever since I have had the feelings of the "constant kidney/ uti infection" that never goes away.:toilet::toilet::toilet::toilet::bow::bow::bow:

[VCNJ84]

just real quick since I am new to this board. I havent posted my story yet because its crazy long. I have been in constany unbearable pain for 7 years now! I just got diagnosed last week. I had surgery this week but im still so confused with all this information. I take about 6-7 10mg of lortab a day to just get by and Im still in pain! Im just in the beginning of this process and really its so much information to take in!

Omg!

Thank God someone is FINALLY helping you!!

I have been in pain only 2 months undiagnosed and am already fed up with the amount of doctors I have been to, wrong medications, no relieve etc. I can't imagine seven years!!!

I will pray for you to find relief soon.

[wolfaleena]

hello everyone:
Reading over some of these posts and i can empathize with everyone of you!
I have been in pain for years with IC.. tried millions of pills, procedures, treatments, trials, etc. Last month, went to a new pain managment doc. He put me on methadone and it is the first time in 15 years that i feel some relief from this pain.
Just letting all of you know this, because i thought that there was nothing left for me to do.... but so far this is helping my pain. Brought it down a few notches. i am certainly Not pain free... but i am getting a break and some relief!
I'll let you know how i feel in a few months to see if it is still working
any side effects etc.
Terribly constipated... but am trying miralax and if that doesn't help doc said they have some type of prescription drug for constipation due to opiates..
Wish me luck and keep me in your prayers.... as I am keeping you all in my thoughts and prayers.
Best of luck to everyone to perservere and get the pain relief that you deserve as a person!!! Just don't ever give up~~
That is the best advice I can give anyone... Don't give up...something will finally work for you. You may have to go through a ton of things... but there is definetly Hope out there.

[laurina]

His name is Dr. Anthony Atala, The Wake Forrest Intitute for Regenerative Medicine. He can grow a bladder..so why not the bladder lining. I called today because I live in 24/7 pain. I have had 24/7 pain since December 08' I have one kidney...and I am pushing to let everyone on this site know to call their office and beg him to help us with one of the top 10 most costly medical conditions. I left a message and my number as I am willing to become a trial canidate. I cannot live like many of you have for years with this pain. My newlywed quality of life is beginning to suffer in all aspects. As a wife, a mother and as a human being. They get hundreds of calls a day. But they haven't heard from us. Please Please Please all of you who are wuffering sleepless nights and relentless pain call and leave a message. I think they are the answer.

Much love going out to you all!!!!!!!!

[laurina]

His name is Dr. Anthony Atala, The Wake Forrest Intitute for Regenerative Medicine. He can grow a bladder..so why not the bladder lining. I called today because I live in 24/7 pain. I have had 24/7 pain since December 08' I have one kidney...and I am pushing to let everyone on this site know to call their office and beg him to help us with one of the top 10 most costly medical conditions. I left a message and my number as I am willing to become a trial canidate. I cannot live like many of you have for years with this pain. My newlywed quality of life is beginning to suffer in all aspects. As a wife, a mother and as a human being. They get hundreds of calls a day. But they haven't heard from us. Please Please Please all of you who are s:help:uffering sleepless nights and relentless pain call and leave a message. I think they are the answer.

Much love going out to you all!!!!!!!!

[BT2008]

Hey laurina,

I actually asked my urologist at my last appointment whether there was any hope for "bladder regeneration" with stem cells and he said "Definitely, but it is all in the research stages right now."

I would also seriously consider being a candidate, but I would have to know a lot more about it first...

I am very hopeful, however, that this may be our answer one day, but until then--we have no choice but to continue to ride it out ...

I know you are totally overwhelmed right now, but just keep hanging in there! I am hanging in right along with you!
:grouphug:

Also, you wrote: ... help us with one of the top 10 most costly medical conditions.I assume you are talking about IC? If so, where did you read that it was one of the 10 most costly conditions? Just curious about your resource!

~Beth

[BT2008]

FYI:

Here is a page from their website that mentions bladder technology:

Wake Forest Institute for Regenerative Medicine

Some of Our Projects

From bladder and trachea, to cartilage and heart –-
we’ve successfully grown more than 20 types of cells in the laboratory. (link to page). We are an international leader in translating scientific discovery into clinical therapies. Our scientists were the first in the world to successfully implant a laboratory-grown organ into humans and have achieved other world firsts. (link to page).

In 2006, we reported long-term success implanting bladders that were engineering in the laboratory into young patients with spina bifida
Today, as the bladder technology is being evaluated in patients with spinal cord injuries and in women with severe cases of overactive bladder, we're working to grow more than 22 other tissues and organs.

http://www.wfirm.org/Our+Research/Projects/

Definitely sounds hopeful to me!:)
~Beth

[laurina]

Ok great! Can you call their office? If enough of us call I think this is the answer. I would love to tell you how this came to me in a new thread if I could figure out how to do it. But I truly believe they are the answer!

Take Care and I'll keep you posted on everything I'm doing to raise awareness and get us the help we need.

[laurina]

Oh Beth the 10 most expensive medical conditions was on the ICA website, I believe. It ranked higher than Cancer. But I will do some more checking to make sure that is where I saw it. I've been researching everything I can because I am not about to take this lying down. Also I am trying to generate some funding for research. If we donate to that we can get more attention.....

[ilovekittys]

I know this post started a long time ago but I saw it, I am in pain EVERY day.

[Debgail]

Hi Dana, you sound just like me....for 5 years I took vicodin a rationed them about 2 a day figuring at least I am getting something for my pain! All the while I suffered. I suffered so greatly with pain I cannot tell you. I moved to calif. and found a really great pain doc. I encourage you to not stop til you find one too...because we all deserve to live our lives out of pain. I hope this helps and I wish you the best.

:pray:Debbie

[Mrsrea]

Im in still in pain everyday! Even though I was finally diagnosed almost two months ago, had surgery, had 4 bladder instills and been all this other medicines. I still hurt extremely bad every day! Yesterday was really bad for me and Im not sure why. My uro is now not wanting to give me pain meds at all! Its so annoying. On monday I am calling a pain specialist and a womens health specialist to try and treat my PFD. Wish me luck with both places. My uro just isnt cutting it!

[ICNDonna]

I have closed this thread because it is so long the last few posts will not load on many computers.

Dopnna