Who has everyday pain?

[DanaW]

I was dx'd in Sept. with IC. I also had several tears in my bladder and areas of Glomerations. I have had pain everyday since that procedure. My bladder is a little better as far as how much I can hold. My pain increases as the day progresses. It can either be a very bad aching to a sharp pain in between my legs. I have pain when my bladder fills (and I still try to hold it as long as I can) and pain when it is empty. I take Percacet, usually in the pm. No more than 1-2 a day. That has helped a lot. I am wondering how many have pain every day and what you take, and how often? I am taking Hydroxizine at night. Couldn't take Elmiron bc of headaches. I do have to say that the pain meds. help with my bladder and with my FM. I can function better when I take them. Those of you who have FM. Do you have the bladder pain every day? I was thinking maybe there was a correlation between the pain of FM and the bladder. (that we may be more sensitive to pain?) Thanks, Dana

[auntiedeb]

grouphug grouphug grouphug

[Dixiefireball]

I still have pain everyday but not as bad as it use to be. I take the heparin at home 1-3x a day and that really seems to help me alot i also use perocet 10.325 for pain.

[carly]

I have everyday pain. I take pyridium plus 4 times a day, and a new drug for bladder spasm. I also take a lot of ibuprofen for my pelvic pain. I also take hydrocodone when my pain is worse. I am never pain free. There are just degrees of pain. The pyridium really helps with the burning. It is not gone with the pyridium, but it does help. Good luck!

[DanaW]

I don't get any burning, just the pain. Dixiefireball? Do you take percacet every day?

[DanaW]

oops! I am wondering how many Percocets you are prescribed every month? I get 30. Which means I am only able to take one a day. Sometimes, if I am having a worse day, I will have to take 2 and then I have to suffer to make up the difference by only taking a half a pill.....how many do you all get a month?

[Morgan Stone]

I have pain everyday with the mornings being the worse. I am on Lortab 5 for pain which only takes the edge off, never taking the pain completely away. I have an appt with the pain clinic on the 12th and my doc has discussed oxycontin and percocet with me saying that is most likely what I will be prescribed.

I also take 2mg of Valium twice a day (which seems to be working somewhat) and pyridium up to 4 times a day if I am hurting worse than normal.

As for only getting 30 a month, have you talked to your doctor to let him/her know that its not enough? Sometimes, just telling them is enough. Have you asked about other meds such as valium?

Please keep us posted and let us know how you are doing. My thoughts and prayers are with you.

grouphug

Morgan

[chinacat]

I'm so glad I came across this post. So many people talk about having flares, but I am in pain everyday (the degree of it does vary) I also have FM (and many other dx!) and wondered if that was why. I was just dx w IC w a cysto on 7/19 and my pain has only gotten worse- stabbing "knives", extreme tenderness (can't wear clothes at times ) and burning, pressure. Right now (since the surgery), I take 660mg Vicodin every 4-6hrs (right after, I was taking 2 at a time). Before that, I was taking tramadol (ultram) 2 every 6 hrs. I found that (at least w FM) it doesn't work unless you take it continuosly- but I always "fear" running out as well (damn ins- last time they wouldn't refill it beac I was 4 days too early- well that's 4 days of extreme pain!!). I'm going to pain dr soon so hopefully they can help more.

Just don't stop until you feel you are getting all the relief you can. for a long time I just "sucked it up" (of course, I had to stop wrkg bec of it) and now I realize that if I don't like the response my doc gives, I have to try another- there are a few out there that understand. Hope this helps and you get some relief soon!!

[ICLori]

I have had some remissions in the course of my 4 years with this disease, mostly in the first year after I was diagnosed. I would be sick for a month or so, get better for a few weeks, get sick again for another month or two. Then by the second year it became pretty much 24/7. Some days were a bit better, other days a bit worse, but I had symptoms all the time.

Then I was put on Elmiron and had a wonderful 5 month remission, but for some reason the IC pain came back and has been constant now for 3 months, despite hydrodistention. I had a few hours here and there when I thought maybe the pain was going away and I felt better, but never longer than a few hours of relief, so now I am on Percocet, 4 per day. I have a two month supply at this point and if I end up needing pain meds long term they will look into probably methadone for me since I am allergic to morphine.

Blessings, Lori

[Pain]

I guess someone DID start an everyday pain thread...thank you! I am severe 24/7 bladder pain and have for 4 years, 6 months and 8 days now. I have never felt even a letup except when I was under general anesthesia :)

Not sure if you saw the post but I too was trying to gauge just how many here on the board are in constant pain in the "describe your pain" thread. I do not relate to the word "flare" as it related to my disease. Ironically I just noticed that Pain Management is Under Managing IC FLARES LOL.

My bladder pain is life altering and has rendered me bascially house/bed bound for that entire time. I must take heavy duty pain meds and have almost that entire time but even with those the pain only decreases some and the side effects are horrific so it's changing out one "sick" for another in a way.

As I said in the other thread, I, along with my doctors do feel there are a lot more 24/7 constant or nearly constant IC pain sufferers out there compared to what was first thought. In my case, I would be willing to increase any other symptoms if I could just get a few minutes a day or God Forbid a few days of little to no pain. Diet has NO EFFECT on my pain levels nor did any of the standard IC treatments/medications. Thanks for starting the thread.

[ICLori]

Pain, Forgive me for being so nosy, but I was wondering if you also have tried Interstim?

Diet doesn't have a huge effect for me - I mean, I do have things I can't eat or drink, mostly juices/fruits, anything with vinegar, and so many pills put my bladder into a flare that I can't take most meds they want me to try, but other than that I can eat most anything even spicy foods and not notice an increase in my symptoms.

I often wonder if there aren't several different "varieties" of IC, you know, several different diseases or causes that all lead to the symptoms we call IC.

I'm kind of leaning toward the idea of Interstim...I'm not so sure I want to be on pain meds all the time.

This is awful, I know I should just be grateful to get some pain relief, but I do have some side effects (I am feeling sick to my stomach some, not bad enough to throw up but bad enough to want to lie down most of the time, plus I feel headachey for some weird reason, and kind of tired or out of energy) and what is most troublesome is the last couple of days my Percocet hasn't been helping as good as it did before. I am finding that I only get about 3 hours of pain relief and then my pain comes back.

I am so scared that means I have tolerance and it won't work for me anymore. I'm leaning more and more towards Interstim as a treatment because of this fear that pain meds won't work for me or I will need more and more. Which I really don't want at all.

To be honest I am really feeling down today, maybe it's just the side effects of Neurontin. I'm just having a hard time accepting that I will always feel bladder symptoms even if I'm on pain meds, and I will always have side effects from pain meds, and that I'll never really have my old life back. It's a hard thing to accept, and I guess I am still in a psychological struggle with it.

I've heard stories of people gaining 70 lbs. their first year on methadone and that scares me, I am already heavier than I ought to be and I don't want my husband to stop finding me attractive. I personally think that heavy people are just as attractive as thin people, but I know the rest of the world doesn't see it that way so I am worried about my husband's reaction.

I know that is such a silly petty thing to worry about, I should be worried about stopping the pain and not care about that stuff, but I still do.

I'm just really struggling today. It helps me a lot just to put my feelings down and to feel "heard" and stuff.

Blessings, Lori

[Pain]

Lori, please be sure to do a lot of research re: interstim. Almost all research I have done..at the clinical level, patient level, etc. indicates interstim is primarily for frequency and urgency NOT pain and is not an optimal choice for primary pain IC patients. There are perhaps exceptions to that but most of the "official" research indicates that the "goal" of the interstim is to interfere with the "urge to go" nerves. So if the only "pain" you feel is that "gotta go" uncomfortableness..perhaps. I'm sure several others will chime in here. Since PAIN is my overwhelming symptom...with much lesser frequency and urgency (only a futile attempt to relieve pain really which never works LOL) not an option for me. Please be sure and do a lot of research...we are our own best advocates.

P.S. I've gained about 65 pounds since I've had the debilitating 24/7 constant pain. Not just the meds but the inability to be active at all.

[ICLori]

Hi, Pain, thank you so much for your reply. I too have gained weight from eating due to stress and inactivity when I am hurting. I don't look forward to gaining more.
I feel so ashamed too about it because I was a soldier for many years and used to be in good shape, a long-distance runner.

It's hard for me to say what is my worst symptom - pain or urgency/frequency. And most of my pain IS from urine being in my bladder - I am convinced that if the urgency/frequency were taken away, I could maybe not take narcotics...I do think that for me the urgency/frequency is the worst part.

So I think I am going to look into Interstim. Now that the pain meds are causing me pain/urgency/frequency instead of alleviating them, I really am quite desperate.

Blessings, Lori

[heiwalove]

best of luck to you, lori. i hope you can finally find a treatment that brings you some much-needed, deserved relief.

i wanted to respond to the issue of weight gain; i know it's a hard thing to deal with, it seriously impacts our self-esteem, and i also understand the fear that your husband will no longer find you attractive. however, try to remember that all these messages are drilled into our heads from birth; we are constantly bombarded with advertising and media telling us that rail-thin, big-breasted images of female beauty are the norm, when in fact, *of *course they aren't. this type of media infiltration is just another example of the pervasive sexism embedded in our society; women are *not cardboard cutouts, we come in all shapes, sizes, colors, ages, and abilities and we are ALL beautiful, dammit. so, to any man (or woman, for that matter) who would leave his wife/partner because she gained weight, i say **** 'em, and karma will bite him where it hurts when he least expects it.

you are beautiful, no matter what your size. know this.

xo,
heather
.

[ad8123]

I have only IC and I have pain constantly everyday. I was on a lot of meds but had to go off them for a test and found out they were no longer doing anything. I am left now with just my ultram but it is just not cutting it. I am going to have to go to a pain MD (when I can afford it). The hydro stopped working for me and the antidepressants both tricylic and ssri did nothing (although I am dependent on Paxil now and have to be weened of it). I have also gained 30 pound due to the sugar cravings caused by Elavil, it is not really coming off but I have stopped gaining, when I am able to walk on my treadmill I can loose 1 or2 pounds that week but gain them back when my activity decreases due to pain.
Good luck

[Spongemom]

I have pain every day. It ranges from a 6-10 on the pain scale. This has been going on for well over a year. My pain is worse in the morning. It feels like hot shards of glass poking around in my bladder and coming out my urethra. I also have severe bladder spasms that I feel into my back and down my legs.

My uro started me out on Percocet and Vicoden. When that wasn't controlling the pain he put me on Oxycontin. Then our insurance started refusing to pay for it! grrrr
So, I was put on MS Contin. Now our insurance pays for the generic Oxycontin.

I now take (generic) Oxycontin 80mg every 12 hours. Morphine Sulfate 10mg sublingual tablets as needed (up to one pill every hour), Vistaril 50mg at bedtime, Elavil 75mg at bedtime, Prelief before meals and Phenergan suppositories as needed for nausea.

I have tried the instills, Methadone, Elmiron, Neurontin and many other things... nothing has helped other than the narcotic pain pills.
My GP thinks that I need to increase my pain pill dose, however I am refusing to do so.
If and when the pain gets sooooo severe that I can't handle it I will reconsider.
It seems like my dosage now is extremely high, but I have been on them for a long time.

I should mention, I have had a second opinion for the University of Washington (Urology and the Pain Clinic). They feel the above treatment is all I can do at this time.

I do wish you well and hope that you can find something to ease your pain.

[Morgan Stone]

I wanted to update my reply as it has changed. I am now on oxycontin 20 mgs three times a day and have been diagnosed with Fm as well. I hurt every day but it has become easier to live with since being on the oxycontin. The oxycontin usually wears off in the night and I have unbearable pain in the am when i first wake up until the meds kick back in. I'm much better off than I was when I only took lortab 5 each day.

Wishing all of you a pain-free day/night :-)

[BLOORE74]

I 2 am in pain 24/7. I was diagnosed 01-02 & have been in constant pain ever since. It really sucks! I used 2 work full time & go 2 school part time, now I can do none of that. I am in tears writing this, I really want my life back! I can't work or go anywhere cuz of the pain. I have 2 take demerol 4 the pain. I don't know why the pain won't just go away. I am so depressed, I just had a nerve block, with no results. How is that possible? The pain hasn't changed at all. I even have an interstim. It helps the urgency & frequency perfectly, & the pain somewhat. When its not on the pain is a million times worse! So it does help, but not enough that I can be w/out my pain meds.

[kiffy313]

Well...
Add me to the list of chronic 24/7 pain...My PM is great, and I tried a 24 hour er morphine, Avinza, but it made me so sleepy and nauseated, I am now trying the Duragesic patch, but am not sure it is going to work, either...I also have IBS and my stomach constantly hurts, too, so I can hardly stand to live with myself, can't imagine how my poor family feels...I asked my PM about the Oxy as I noticed that several of you are on it, but she said it would "tear up my stomach"...??? Right now my stress is really making it worse as my Mom lives with me and she has lung cancer, has had surgery, lots of complications and now we are waiting for new tests as they think the cancer is not gone, like they first thought, next to my husband she is my best friend and I just feel like crawling in a hole and staying there...anyways, good luck to you all and I hope we can ALL get some relief...
Take Care,
Kif

[SusanC]

Kif,
So sorry to hear about your Mom. It's bad enough to be in pain all the time, but then you're thrown into something happening with your family. Sending an :angel: to watch over you.

I also have pain 24/7. Two Interstims have controlled the frequency/urgency/burning most of the time...and, brought things under control enough that, with meds the pain can be brought down sometimes. After 9 years of IC and much experimenting with meds, here is where we are:
My "cocktail" is Elmiron, Neurontin, Hydroxyzine, Vicodin, Trimethoprim,for medications; but it is only during the twice daily instillations of 0.5% marcaine into the bladder that I have such a low level of pain that I feel normal.
Just started Algonot Cystoprotek in Jan., and still take 2 tablets twice a day....I truly believe it is helping, and may opt to increase the dose if my uro OK's it.
Even though it's so hard to even think sometimes at my doc's...with the pain and the medication fog....that's where we are.....not great....and NOT the way I want to live my next 50 years....what keeps me going is thinking that there are others...and even children who cannot speak for themselves....who are worse off than I am.....Not pretty, but some days, that's what I have to do.

Hope this helps!
Best to all :grouphug:

[SunDaze83]

I have had pain every day for the last 2 months. But my pain medicine seems to be taking off the egde of the pain:)

[moelissat]

I,too am in constant pain.It's much worse than frequency.Now taking oxycontin,klonipin,surmontil,zoloft,neurontin and sometimes phenergan.Was on duragesic patch,but stayed nauseated.As far as weight gain,it is definitely a problem for a lot of us.I discussed with my doctor the effects of elavil and weight gain,and was switched to surmontil.It is new,does the same thing as elavil without the weight gain side effects.I don't get on the scales,but I have dropped a clothes size,so that is a positive! We all just have to hang in there,and keep trying things until we find what works for us.It seems everyone has there on combination that works,at least for a while.Blessings to all.

[donutgirl]

HAND UP....Me too....I too am in pain 24/7. Althought I hate to see so much of us in constant pain, I am glad the post is here. I was wondering if it was only me. Thank goodness my dr. believes in pain meds and understands the pain of IC. I have 750 mg. of vicodin for my pain and I have morphine suppositories for when the bladder spasms are driving me crazy. This past Tues. I took 2 vicodin and a suppository and was still in pain. Thank goodness it's not that extreme every day...I'm not sure I could survive it. Some days I just break down and cry...it is so depressing & frustrating. Love to all my fellow ICers.

DIANE

[Pain]

I have 750 mg. of vicodin

Just so no one panics..the 750 is the "Tylenol" component of the drug Vicodin. The hydrocodone is likely 7.5 mg (or 5mg or 10mg). There are two numbers separated by a / - the first is the hydrocodone, the second is the Tylenol. Just thought it might be good to mention that.

I am sad to see so many of us suffering but as I suspected, it truthfully no longer is only a very small percentage. My doctors suspect the 24/7 pain and/or close to it is much higher than first reported.

Sadly, many uros report the frequency/urgency and "suspect" that the pain is tied to those two symptoms when in fact for many of us the pain is severe 24/7 regardless of the f/u symptoms.

Thank you to ALL of you who have come forward and shared in this thread and others. It's so hard to take it one day at a time but that is what we have to do because everytime I think of living like this for another 20+ years I go "black". I've had 24/7 pain 4 years, 6 months and 14 days now but hey who is counting.

I do get angry at the VERY SMALL PERCENTAGE of ABUSERS of our medications that are making it more and more difficult for those us who need our pain meds to live to get them.

[Amyinagony]

A warm hello to everyone in THIS thread, :grouphug:
Im right with all of you on the 24/7pain.It is so hard to deal with every day life :bonk: having to live with so much pain everyday.Im also so sorry that there are so many suffering everyday,but glad that I am not the only one.It is also nice to read the stories of those whose pain is under control,on the other hand hard to read them because I am sort of envious of you,and praying for my ship to come in.So far though,my ship is sinking.Could someone please throw me a life-preserver? :shake:
Wish you all better days.
Amy

[Sarojini]

Hi Amy... :welcome:

I'm sorry to hear you too are in pain 24/7. When my IC began, it began with just frequency and urgency. However, it quickly progressed to pain for me and now I am forced to include myself in the 24/7 group... :( *sigh* I take MS Contin (long acting morphine sulphate) 2x a day, and keep Lortab (hydrocodone) around for breakthrough pain... in addition I am going to be starting physical therapy for my pelvic muscles.

I really believe a lot of this "progression" had to do with a toxic job situation that I have just recently decided to leave... as we are doing okay financially I've decided to hold off on looking for another job. Instead, I am going to dedicate the next 2 months to my health and see if I can get myself out of this vicious pain/frequency/urgency cycle.

I feel for everyone posting in this thread... :(

[Amyinagony]

Hi Jen,
Good name for this group: The 24/7 Pain Group :grouphug:
I have a 'toxic' job to,but cannot quit.I am in debt up to my eyeballs with mega medical/doctor bills (over $10,000. and that is after my insurance paid)and bills that I could not pay while I was out of work the hole time before being diagnosed and since to.I am writting down all of the pain meds that everyone here is mentioning and taking the list to my doctor to let him know what other people take.Maybe I can try something different that would help me get better relief.This is just flat out and totally rediculous to have pain like this everyday.

[Sarojini]

Amy-- it stinks to feel trapped in your job doesn't it... I stayed at my own toxic job for 3 years longer than I should have, first for financial reasons just like you, then from some screwed-up sense of duty and a desire to further my career. So I know what it's like... I hope things improve for you as soon as possible!!

In the meantime, I hope you're able to find some pain relief options that work for you!!! I think it's a great idea to compile a list of options to take to your doc with you. :)

[kiffy313]

Hi all,
Wow! I hate to see that there are so many of us! Amy, here is a life preserver for you...hang on, tho I can swim, the undertow can get rough...LOL... Seriously, tho, I hate that you are not getting much relief, the chronic pain cycle, if not broken can really be hard on the body! I ordered the books from here, and I have also read Dr. Brookoff's papers on chronic pain and found it helpful to show to my PM Dr., too. Maybe that will help some of ya'll... I knew my pain was bad, I have had lots of kidney stones and one child, and when my IC is at it's worst it blows all of the other pain away!!! And, even tho it is not awful all the day every day, it does hurt every dang day...I am not having trouble getting the Dr. to help me with my meds, but I am having trouble trying to get used to them, and still try and work part-time, and be my Mom's full-time caretaker...I think probably something might work, if I could just get beyond the side-effects...(oops, I almost wrote side-defects, kinda think that may be appropriate, too) :)
Take Care,
Kif

[donutgirl]

Oops...you are right Pain...guess that's what happens when I try to post at 2:48 in the morning. It is 750 tylenol and 7.5 hydrocodone. Sorry if I confused anyone. Hope today finds at least a few of us feeling better.

DIANE

[Andrew_J]

I've had IC for nearly fifteen years. Since it reared its head first back in 1990 (perhaps even '89), I've suffered pain. In the beginning it was usually confined to nights. For the last ten years it's been constant; an everyday counterpoint to my daily life.

It never goes away. The narcotics cut it to a dull roar. The pelvic floor spasms are helped by the Valium. But it never goes.

In the middle of a bad flare as I right this. And that's after LOTS of Dilaudid for breathru pain. Well the pain's breaking the Dilaudid--not the other way around today.

It tested my sanity at one point. But as an Auschwitz survivor once said, "Human beings can get used to anything."

It's been so long since I had a completely painfree day I can't remember what it's like.

I'd gladly take frequent urination (mostly conquered by Elmiron) over this pain.

Arrrgh.
________________________________________


PS: I used to post under the name of Pain_Man.

[BLOORE74]

I have everyday pain, I take demerol 50mg 4 pain & lortab 10/500 4 breakthrough pain. It still doesn't take the pain completely away! I hate waking up every morning cuz I know I'll be in pain. It is soooooooooooo frustrating! :cat:

[Amyinagony]

Bloorze, :butterfly:
I know just what you mean about waking up in the morning,that's if you have even had the chance to catch a hour or two of sleep.My psch dr gave me tranquilizers to help me sleep.I cant take them,they make me sleep way to long (around 4hrs max) and when I wake up I have so much pain that I crawl to the bathroom,crying in pain. :toilet: It's to long to hold my urine.What in the heck are you supposed to do?I know one thing, something has got to give soon,because I can't go to much longer without sleep.I feel like a zombie.

[Ginny]

I have also had IC for a long time. 20 years. Waking up in the morning is the worst. I have to laugh when I hear the saying "God only gives us what we can handle". He must think I am some kind of superwoman here.

Tranquilizers are not the answer for sleep. Every tranquilizer I have even taken has only given me 4 hours sleep.

Elavil is much better for getting sleep. I still wake up about 4 times at night to go to the bathroom but I go right back to sleep. If you make sure you get 8 or 9 hours sleep the getting up is not so bad.

There is an article on Fibro and IC if anyone is interested I will post the link.

Ginny

[Jocotter]

Pretty much pain every day lately. In the past I had mild pain almost daily, but very mild. Now it's bad pain daily and when I can't stand it, I use Hydrocodone.

[moelissat]

Hey Ginny,Could you post that site? I'd like to read it! Thanks!Hope everyone is hanging in there!

[Krowe5656]

Dana :
I too have pain every day and it gets worse at night. Uggg. i know how ya feel and by reading the post i see that many of us have pain every day. for me, everything can cause a "flare". to me, a flare is something which happens when the 24/7 pain keeps me in bed 24/7 for days at a time. unable to eat or even shower. thank goodness for my bother & fiance'! things like foods, drinks, vitamins, stress and gosh forbid i should even try ... sex ... oh gosh i pay for it days and days even for weeks after a few moments of joy! sorry not meaning to get too personal. but seriously it's so aweful. i use the prescribed Rx's everyday and lots of advil, heating pad and ice packs. and prayer. hope you find reliefe! take care. Lv. Kara

[Audrey Rose]

Just wanted to say I am also a member of the 24/7 Pain Group.
What my URO and I call a "flare" are those days when my pain jumps up past 5.
I use a modified version of the ICN Pain scale. I have a little paragraph for each level. I gave copies to my doctors (PCP, URO, Psychologist) so they can correctly interpret my pain. My score is lower than what most people use but it gives my doctor a lot more info about my disease. Here's a brief version of my scale.
Level 1: No symptoms of IC
Level 2: Slight symptoms, but can "forget" pain if distracted.
Level 3: Mild symptoms, constantly aware of pain, can perform daily activities.
Level 4: Moderate symptoms, need to rest frequently, need to be near bathroom.
Level 5: Intense symptoms, using everything I have, I am in bed, sleeping a lot
Level 6: Intense symptoms, having trouble sleeping, nauseated, still feel in control
Level 7: Severe symptoms, can't stay still because of pain, starting to lose control, questioning whether this is "just" a flare.
Level 8: Out of control, may be vomiting, calling doctor for advice or going to ER if after hours.
Level 9: Pain is intolerable, I am crying, I am in ER regardless of time of day.
Level 10: Pain is excrutiating, I just want to die

I live at 3-4 mostly. Our goal of therapy is to just keep it below 5. I keep a daily journal and include void times (and amounts once a week) and pain score with each void. I was only at 10 once...before IC diagnosis when I had been drinking 1/2 gallon of cranberry juice a day!! UGH!!! I didn't know!! I was in ER for 11 hours that day!! My urine was bloody, but no infection. I was vomiting. And I was starting to pass out from the pain. It was awful!! They told me to stop the juice and research the IC diet online and an appointment was made to see a URO. Life has been difficult, but at least it has never been that bad.

My URO told me on day one, that IC patients who state pain as their biggest issue are the ones that are most difficult to treat. He warned me that I would, at the very least, have occassional pain for the rest of my life, and could possibly have some amount of pain every day for the rest of my life. Unless a cure was found. He said our focus was to give me the best quality of life and to protect my other organs from medication side effects. Some may say he is harsh, but I appreciate his honesty. And his trust. If I say my pain is over 5, we discuss options and he gives me a new prescription. IC is a horrid disease with different levels. The 24/7 club is the worst. It means your life has been forever changed. :( But we will survive....TOGETHER!!!
:grouphug:
Hugs to all of you in the club!! You are not alone!!

[Ginny]

Here is the article on IC and Fibromyalgia Ginny

http://www.fibromyalgiasupport.com/library/showarticle.cfm/ID/1139

[Jocotter]

I'm thinking the question should have been:

Does anyone NOT have daily pain. :lmao:

I vary usually at a 2-3, but lately a 4 with an occasional 5 day. :(

[lindy lou]

I can sympathize with the 24/7s. I can't even imagine those of you who have had this pain for years. I'm just a 2 week dx newbie but 24/7 pain for 4 months. I started Elmiron and know it may take time but need some short term relief for the pain. I can't even stand at the sink to wash dishes or start a load of clothes without sending my bladder and PF into spasms that double me over. I've tried Pyridium, Prosed, and ibuprofen. I take Vicodin only to dull my brain enough so I don't care. The most comfort I get is on my back, with ice and Vicodin. Hope to see my uro or at least talk to him today. Linda

[Krowe5656]

Linda:
Welcome to the boards! i'm sorry you have ic but i know i felt better when i knew what the pain was from. it's a hard disease to have, well any disease is hard i suppose. i hope the elmiron helps you. have you asked your doctor to send you to a pain clinic? i know exactly how you feel about not being able to stand long enough to do the dishes or how it hurts to do laundry. also, i like to wear makeup now and then but i can't because i'm unable to stand in front of the mirror long enough. mascara? forget about it. or do my hair up nice? nope. always put it in a braid and call it good. i hope you'll be able to find some reliefe! let us know how you're doing. take care. Lv. Kara

[lindy lou]

Thanks for the support. Today is better! I started on Elavil two days ago. It seems to have made a difference. I am uncomfortable but not so much pain anymore. Hopefully the Elavil, Elmiron and diet are my answer. I didn't think I would write this a few days ago so all of you who are experiencing pain 24/7 hang in there. I got better and hopefully will continue to improve.

Linda

[moelissat]

Ginny, Thanks for posting the article site.It was very interesting.Actually,I had an appointment with my GP today,and she basically said the same things.I don't know if she had read the article,or already knew.I hope all you 24/7ers are doing ok.This is such a hard thing to deal with and it's hard sometimes not to just feel hopeless.But we have to keep our hope.For the past five days,I have been taking only 1 oxycontin a day,along with all the rest of my meds.I have to kind of fight the pain for a few hours in the afternoon,but at least I'm not a zombie all day!Everyone take care! Melissa :)

[JudyS]

Well, I'm definitely one of you 24/7ers....For years, the pain was constant, but I was able to push through it most of the time so I could work & take care of things at home. I loved my work and it was always an escape from my pain for me. In 1998, though, my pain finally got to the point where I could do nothing but lie in bed and cry. I started out screaming, but eventually I didn't have the energy to do that anymore. Once I was diagnosed, I willingly tried every option that I read about or my doctors suggested: DMSO & Heparin instillations, Flonase instillations, Elmiron, Neurontin, Elavil, Allegra, sachral spinal chord stimulator, Acupuncture, Relaxation & Biofeedback. Primary pain meds: went from 10mg methadone --> 20mg methadone --> 20mg Oxycontin --> 40mg Oxycontin -->80mg Oxycontin. Right now, I'm at 80mg Oxycontin every 12 hours. Breakthrough meds: started with Vicodin, then 5mg Oxycodone and now I have 4mg Dilaudid (2-4 every 4 hours for breakthrough).

I have to say that as of this moment, the most helpful treatment I have been given has been my pain meds. Nothing else has made the slightest difference in my pain. Even as it is, my pain is almost never below a 7 and often a 9 or 10 on a standard pain scale. I can't sit up, stand, walk, bend, ride in the car or do just about anything without my pain getting worse. I only sleep for an hour or so at a time because I wake up in agony as my bladder fills....I have had to accept the fact that my prior life is over and this is my new one. :(

As I have posted in other boards, though, God has brought me to an activity that I can do without making things worse: motorcycle riding. For whatever reason, the focused vibration on the perineal area tends to drown out the pain signal. Plus, the vibration on the erogenous zones stimulates my body to release endorphines and pleasure sensations which tend to negate the pain (at least while I'm riding). It's not a cure, or even an option that can help all the time, but it gets me out of bed and gives me a reason to hang on during the really bad days when even riding is not an option.

[wendylou]

Hi everyone,
I am also a 24/7er. Days are usually easier for me but mostly I have gotten used to the pain. I have tried the cysto, Elmiron, Elavil,Neurontin, etc. and also found the only thing that helps is pain medication. I am meeting with a new doctor tomorrow since my old one decided he would not prescribe any more pain medication for fear if becoming an addict. I am trying to stay upbeat but it is hard when they want to take the only thing that helps. At night is so bad for some reason. My pain gets so that I go into the other room and cry. I can't remember the last solid nights sleep. It has been years. I am hopeful that there are treatments I haven't found yet, and am trying the diet. Hopefully it will help. Good luck to all of you. Wendy

[IC SARAH-CPP]

Hi all,
I know this is an old thread but I am new here and wanted to add my experience to it.
I am not a 24/7 person all the time. Sometimes my pain is 24/7 for like a week at a time, then it will quite down for a while and give me a break. I feel so sorry for all those who have 24/7 pain - every single day.
I always try to explain my disease to people and they never understand. To them it is like - duh - a bladder - how does that cause so much pain. However, a few of my girlfriends have had bladder infections and I tell them - it is like the worst day of a bladder infection - but all the time!!! That usually shuts them up.
I take vicodin pretty much every day. My doctor and I are always going back and forth on this because I don't like to take it if I don't have pain, but she says that it is easier to control if you don't let it get so bad. SO, for now I will try to take 1 - 5 mg vicodin every six hours.
It is so hard for me to work. I have my degree in financial analysis and work as a corporate account manager for a large construction company. I need to have an excellent memory and think fast- so these meds really make that hard. However, I have always said that pain is the biggest distraction I can think of!!
So that is my situation with the 24/7 pain.
Sarah

[gotta_go]

I was wondering if any women out there have tried lidacane(sp?) for their pain? I have stabbing pain which seems to come from the opening to my urethra, and sometimes it even feels like there is clitoral pain as well (or maybe that's just because there are so many nerve endings in the clitoris, perhaps it's referred pain?? I don't know. But I am very limited as to what oral meds I can take due to chronic renal failure from chemotherapy. I'm only allowed to take tylenol which does nothing, really.

I read about lidocane in the IC survivors guide and I was wondering how much I can use, if it's harmful, will it burn, etc... I don't want to make the problem worse than it already is...Thanks- :loco:

[tango58]

I to am in pain all the time. My I.C. started in july 2004 as a bladder infection that didn't clear up. Saw the uro in Octber and he didn't know what was going on with me. No RX,s for any meds at that time, but he booked me for a cysto in Nov, I had that done(still suffering) and he said my bladder looked fine but my urethra was very inflamed. No Kidding. At that point I was handed a RX for Ditropan XL no instructions on how to use it or why I was given this. My next appt in Dec I explained I was still in terrible burning pain and he gave me Elmiron. I wait in his waiting room for 1/2 hour and when I do get to see him he spends all of 3 minutes talking to me. He never brings in my chart, I never see him writing anything about what we discuss, I guess he has a great memory or something. So I ask the receptionist what do I do because by this time he is gone on to his next patient. I book for January. And again I saw him this Tuesday and the same thing a 3 minute chat I ask him if I can try Atarax and he totally ignores me. I told him that my GP had given me a RX for Pyridium and he said if I wanted that I would have to call her. I couldn't believe it. He said it sounds like you've been doing alot of research on IC, well what else have I got to do. I came out and asked him what exactly are you treating me for and he said IC that was the end of my appointment the only thing he gave me was more Elmiron. He said if this didn't start working within the first 3 months then it probably wasn't going to help me!! So I'm back to square one. I'll have to go back to my GP and ask to see another uro. I am going to see a gynecologist in May but I don't think I can stand this burning pain much longer. I have been following the IC diet for two weeks now and I think that it does help somewhat with my IC belly. Am looking forward to receiving my Prelief from the USA soon. This is so discouraging its hard to keep a positive outlook when you feel that someone who should be helping just doesn't care. Oh he also said if I wanted I stop the Elmiron and he would do DMSO. I have got 5 weeks of Elmiron in me so why wouldn't I want to keep trying this. This is so frustrating.

[trytosmile]

24/7/365 going on 7 years now. I've had enough...lol. Pain started on and off for maybe 3 months, thought was a UTI but test results came back, no. Then one day I woke up PAIN and I've had everyday since.

[Dianna M]

I will also join the group as I am in pain 24/7 regardless of how much pain meds I take. The pain meds allow me to keep the pain levels down but for the last 8 years since I had a surgery that left me in agonizing bladder pain I have had some pain always.
Pain meds have been the only thing that I have done that have relieved the pain at all ( and I have done every treatment out there except Botox and Cystistat, which I am considering starting - I hate the idea of using catheters again even if I do use child size ones the pain is close to unbearable)
My pain meds: 75mcg Duragesic pain patch, 20 mg per ml of liquid morphine for breakthrough pain which I take everyday of approx.10-15ml which is a lot of Morphine and then Belladonna & Opium suppositories if I have bladder spasms.

[moelissat]

Greetings to all the 24/7'ers,old and new.I have been given lidocaine,but it is only for the topical pain,and quite temporary I was told.As for having a URO who is insensitive,I'm sure a a lot of us have been in that situation as well.My Uro really doesn't even really see me any more,he has turned me over to a pain doc.Says he can't do anything else to help me.We all just have to keep pushing on and trying not to give up.Everybody hang in there! Melissa

[gotta_go]

Melissa, If you don't mind my asking, how much lidocane do you use for the pain, and what is the strength? I have a tube here in the house, I believe it's 2%. I've been afraid to try it because I'm afraid it will burn. I don't want to make things worse than they already are! Thanks for your help-

[moelissat]

My lidocaine is 2% as well.But I honestly,don't really use it,because the nurse says it will really numb you and you have to be careful.She suggested I use it during intercourse only,which doesn't make much sense to me,so it just sits on the shelf.

[ibtracy]

HI! I too am a 24/7 pain sufferer. My MD is refusing to continue calling my breakthough medications and has me on 40mg of Oxycontin in the a.m. and the p.m. and it putting me on Neurontin 3x a day. I'm starting out slow, so still in the 1 pill every evening stage and am slowing working my way up. I really don't see any difference in pain but it's only the 2nd week - have to keep an open mind I guess. I have not really had any remission periods, lost my job to IC in July due to pain, frequency and too many days missed of work. They let me go right before I was eligible for FMLA leave time. I now have applied for social security disability, I was supposed to hear a decision this month but now they've forwarded my case to Kansas City and my case person said it wouldn't be til the end of February now. :mad: I'm sure they'll deny me, most of the time they do. If they do deny me I have to do something for money whether it's babysit at home or something and with my level of pain I can't imagine trying to work with all the pain that I have. It's gonna be difficult but we have to do something financially because we're gonna end up loosing everything at this rate. :help: Please keep my family in your prayers.

I have pain pretty much everyday, some days are better than others and sometimes it depends on my physical activities too, what I've done that day, etc.

Hope you're feeling better and get to experience some break, even if it's just a few days of remissioin.

Tracy

[moelissat]

I will definitely keep you in my prayers.I have been trying to get disability for months now.I am on my second appeal and waiting to hear from it.I was on oxy also,and took myself off of it,because it just seemed as if I was losing all my ability to think,and remember things.Right now,I'm on Neurontin 3 x a day,Lorcet plus 3 x a day,and zonegram 3 x a day.I still have pain every day,and the medicine pretty much keeps me in the bed.It's like,you can't function without the meds because of the level of pain,and can't function with it because it just zombies you out!!! So frustrating.We all just have to hang in there and realize we are not alone! Hang in there!

[Hollydoll85]

Pain everyday for me too...and my doctor frowns on prescribing pain meds...grr.

[PenguinK]

I have pain every day. I also have Pelvic Congestive Syndrome, an equally painful condition that involves swollen "vericous" type veins in the Uterus, ovaries, and vulva.
If the IC isn't acting up, the PCS is, or they act up together and it's Vicodin and heat, lay down on my right side (only) and cry until it stops. It's very unnerving for my son and husband right now, there's nothing they can do and they feel helpless.
I take Elmiron, Flomax, Pyridium Plus on a daily basis, and Vicodin as needed. I try to tough it out because I'm terrified of becomming addicted. I never took anything for headaches, etc unless it was the last straw. Now I pop pills like MnM's!

Good luck and God Bless!
KK

[free2bme]

meeeeee toooooo!!!! i am a 24/7er. my pain is in my urethra. constant stinging. nothing helped until recently. my ob/gyn put me on elmiron and i have been completely pain free this week. even the stinging is gone. i didn't realize how much pain i put up with until now that i have a pain free day to compare it to. i haven't felt this good in 5 years!

hope you find something to relieve your pain soon.

[Snuph]

I have been diagnosed with IC 8 years and fibro 3 years ago. I have pain everyday from the IC. The fibro. pain is not as constant but I can't miss taking night dosage of Elavil to ensure sleep. It is the only drug I am on. I have reactions to narcotics (from- rashes to retention to itchy to kidneys shutting down) so I can't take them. Recently I have lost 25 pounds. I went low carb and for me the sugar cravings decreased as I stayed on the diet. Over Christmas I was having sugar again and I found the cravings are back so I had to cut all the sugar out of my diet again and the cravings are slowly going again. Thank goodness for my low carb cookies ( 1 cup peanut butter or almond butter, 1 egg, 1 cup splenda Bake at 350 deg. for 8 min.).
I also have had interstim for 4 years. It has not helped me with pain but does help with frequency. My bladder used to hold 25-35 ml It now holds about 125 ml.

[snoops71]

I would be in awful pain every day, if I didn't take antibiotics, which keep it away. I have had pain daily at one point, and it was a nightmare!

[blondiecat]

I too have pain everyday....every single #&@! day. I am in the process of going to see a PMC doc since my uro's standard comment to me is "I don't want you to get addicted to narcotics" and I suffer a lot.

My pain is different each day but always there from deep ache in the bladder and hip area to shooting and stabbing pains through bladder, hips, down the front of legs and up to the right side kidney area. I also have fainting spells when the pain is at it's worst and also nausea and vomiting too. I hope this pain doc can help me:( I need some relief.

[navemj]

Dana,
I think the elmiron is very important. Since you cannot take it orally, has your doctor considered having the elmiron installed in your bladder? This would probably help alot. Hopes this helps.
Maryann

[MakinIT]

Boy, Blondie, your pain sounds like mine....Yes...I am in severe pain everyday and have tried almost everything but I keep researching. I can't use interstim because my pain nerves have wrapped around my motor nerves and I arched to the point of painful muscles for days afterwords. I've had flouroscopies to look at the nerves...I've tried at home cathing...which is easy for me, but tears me up...yes,...even the little ones..dammit, My pain is deep in pelvis and in my bladder.... OH...I've had pelvic floor therapy which was great...I can't keep it up though because my insurance runs out. My chiropractor does myofascial release...hurts like hell but feels better after...breaks up the adhesions joining together. I take 180 mgs morphine day (90 AM, 90 PM; 200 mgs topamax, split in half; 400 mgs zonegran...those two drugs slow down pain at the source...end of nerves) I also take atarax, 50 mgs. I have 10/650 mg of percocet for breakthrough pain (50, if needed, usually I don't need more than 50in 5 months) and can take up to 20 mgs of valium if needed. With my PM drugs, I take those, crash within 15 mins, wake up 2 hours later and spend the rest of the night fighting to stay asleep. (project with my shrink in the next few sessions)

OH, I also take well butrin and estrace (hystercetomy....) Anyway...I think there are more of us in severe pain than we like to admit..The pressure to just suck it up. and we can't. It freaking hurts. What can I say.

Good luck

[Lorraine]

Hi, I'm Lorraine and have been a member for a long time, just don't really post. I read your post though and felt I should reply. I've had IC since 1993. I have daily pain which goes from bad to worse. I take vicodin 10mg every 4 hours if I need to.
One thing I have learned is not to let your pain level get to high. The longer you wait to take your pain meds, the harder it is to control your pain.
I would love to have a remission but for the past 3 years or so it's been the constant daily, tell time by your pain for me.
I hope you get to feeling better. Remember you are not alone.
Peace,
Lorraine

[MakinIT]

Hi Lorraine..that's good advice...were you sorta speaking generally or to anyone in particular? (This Thread has taken on life of it's own) I sure agree with you on the pain thing but then there is that little voice from, I'm sure, media talking heads saying "BAD BAD BAD" when Ido take anything in addition to my reg. meds. (hey, I take 180 mgs/day of morphine.....also take 15 mgs valium per day PRN and 10/650 percocet PRN for breakthrough pain...today was one of those days...I was miserable, to put it lightly..couldn't even stand straight. Ugh)

Anyway...I go back and forth on reading this...I think I read at the very beginning of the page that people usually only post when they have issues or are in pain so new people not to get discouraged. This won't necessarily happen to them.

have a great day....bye

[sweetpea2555]

Hi! I also have pain on a daily basis. I have had pain meds in the past but it is hard to get them from the doctor because he is afraid of addiction. My best pain treatment is lots of rest and my heating pad. I use moist heat. It seems to help the most. When my pain gets unbarable, I go to the ER. for help. Hang in there.
I also think I have fm and often wonder if it is realted!

[MakinIT]

I've learned from this experience that docs are living in the stone age in terms of pain control. Yes...these are powerful drugs and yes we will more than likely get physically addicted...It will suck going off of them. But not as bad as suffering the pain of this disease. I've been in and out of hospitals for various things over the past 20 years and watched this management of pain change and grow. At 19, I had a very painful syndrome that had me paralyzed for a while. My muscles shrank, (atrophied) could barely breath, and I was increadilbly scared and in pain. But they gave me nothing for anxiety or pain because...You got it...I might get addicted....As I got older I noticed the hospitals had pain scales, and had all kinds of literature available on "how you heal better when you aren't in pain" and nurses constantly asking you to rate your pain...if it goes above a certain point..boom, medication. It's still that way, in hospitals, especially on surgical floors. So why don't these docs read the same literature that shows that patients heal faster if pain is managed? I know for a fact that when my pain is controlled, I can get household chores done, maybe do a little work in the yard, maybe even start thinking about work. But when the pain is bad...Holy smokes...all I can do is stay curled, as you said, in a little ball. That certainly isn't helpful or healthly and winds up cramping your muscles and hurting you worse!! And how can you possibly stay positive or think of a future? You know, as a teacher, an expectation I had was too stay current on the most effective current teaching practices...In fact, to keep my license current, I have to take a certain # of classes of every 5 years. I just don't think these docs read the literature or go to conferences. (Hey..It doesn't say on their med. license wether they were A students or c students...that is wanting to continue their learning) It's very frustrating and I feel for you and all people who have such narrow minded docs. Don't know why, but it seems uro's are the worst. Maybe they don't get as much training in narcotic admininstration or because most seem to old men (mine is a young woman..she still only does valium as the "heaviest" drug but she is a sweetie)

Tracey

[PStalsby]

I'm posting this message while at home, alone, because I couldn't bear to go out to grandma's house with my husband and kids......I've been on elmiron since about March of '04.....I thought it was the cure...but recently, the pain has returned....I'm new to IC and just don't know what to do.

[MakinIT]

:welcome: Hi PStalsby....You know...I'm sorry, I kinda had the same experience too...elmiron was touted as "the cure". Unfortunately..the disease has different reasons it has started or worsens or gets better. I don't know what your doctor has given you for pain, if anything. If you've read this board enough, you can see that doctors are ALL over the place in terms of pain relief. If you have pelvic pain, you may need pelvic floor therapy. That's a specialized physical therapy. They train you to relax your pelvic floor muscles. I'm in that place, again. I need to have that training again. I also have a chiropractor that I see every week that works on my pelvis and keeping the muscles loose in my pelvic floor. (He does that from the outside...a PT does that from the inside, so to speak) I just feel fortunate to have doctors willing to listen to me discuss my pain issues, and willing to help me. I'm not sure what your med situation or doc situation is. You can Private messageme if you'd like, or anyone on the thread :) As people have said to me "things will get better" this thing goes up and down. But, since you are new and haven't tried all the fun stuff out there, you may find something workable. :grouphug: Keep your spirits up

tracey

[navemj]

PStalsby,
Sorry to hear you are in pain. I know what you mean about the elmiron! It used to work for me too. Don't give up. There is hope out there. You just have to find the right doctor until you find help. Hope you get to feeling better soon.

[PStalsby]

Thank you very much....I'm gonna get in touch with my doctor and see about my options.....

[mlb]

Hi, wanted to respond. Yes, it is daily. I take Neurontin which has helped, but it really doesn't take it all away, just helps it. The nerve pain and burning are the worst. I have the vulvodynia too. Fun, fun.

Marsha

[Lorraine]

My post was just to everyone in general. It seems the longer you have the IC monster the more you learn. I tried elmiron and was on it for 2 years before I gave up. It just didn't help me at all and caused stomach problems. I was even taking it out of the capsule and emptying the powder on my tongue. It was said at the time that the capsule itself was causing stomach problems. Didn't help and I so wanted it to.
Today I've been in bed most of the day and on meds all day. In addition to vicodin I take elavil 25mg twice a day, valium 10mg twice a day for my pelvic floor issues, atarax 1 in the morning and 2 before bed, effexor 75mg daily.
I've had pelvic floor therapy and it did help for a little while but then it stopped working too. We just have to know that we are not alone and that some people are worse off than us. Thinking that way helps me to handle myself a little better.
I wish everyone some pain free time.
Lorraine

[codyryonwoodward]

:welcome: PStalsby. Where in Louisiana are you located. I live in Louisiana also. I live near Mansfield LA in the Northwest part of LA. About an hour South of Shreveport....I to tried Elmiron. I to quit b/c I had side effects from it. I have urgency, frequency and daily pain with my IC. I have just recently been approved for SSD and I also have a Interstim device...but right now it does not work right.

For my daily pain I take lortabs which I get certain amount a month from my OB/GYN. The rest of the time I take Ultram. I find that the Ultram works good for me. I know alot of people cant take it and it's effects wear off faster than most pain meds. Ultram is not consider a narcotic but it has narcotic effects on the brain. My uro does not like to prescribe narcotics for me, as alot of drs do. I hope you will be able to find pain relief.

[MakinIT]

Aww Lorraine, I'm sorry....You know, in terms of PFT, I think we all need a "tune-up" every so often (for those of us that it worked on.) I mean, my chiro is doing some stuff working from the outside, rrrrreeeeeaaaalllllyyyyy low (I have a lot of trust in him..but man, this actually causes me to twist almost off the table it hurts so bad) He breaks up those "trigger points" that PT's do from inside your vagina, only he does it from the outside by working his way in from the hip bones with his fingers, then palm, then fist, and finally, if I can take it, elbow, to break up the trigger points he can feel in the perineal muscles (from above) around the bladder and vaginal area. He says my bladder doesn't even move, its like locked in with fibres. So, if he find a a thumb sized trigger point, he'll use his thumb (again, in my hip and lower pelvic bowl area, not the pelvic floor) and gradually increase pressure until that spot suddenly loosens. It's wierd because I can feel this intense burning pain, then it's gone.
Funny..my docs are mostly ok with my narcotic pain relievers, although I think the use of them is not as effective as it was...(I'm really struggling...they really upped my pain meds in December but now I'm in incredible pain by 2 pm and struggle until 7:00pm to take my evening meds. I don't know what to do so I've gone back to taking valium at 2 which helps.) Problem is, all my docs, except the uro freak about the use of valium. I take 180 mgs of morphine, topamax, zonegran, atarax, and percocet PRN (which I really try to avoid) and valium (which uro gave me to ake 3x/day and all my docs talked me into not taking as it really magnifys the other meds, and takes forever to get out of my system) but I've started taking all 3 at 2:ooPM and it's starting to help. I'm afraid tometion it to my psych b/c he and my pain management doc are really against it. (My pain management doc is surprisingly against medications....Who'd a thunk it?)

Good luck to you...I'm sorry you feel so bad. I wish we could all just have this magical wish blow over us at the same time and have it go away.

Tracey

[PStalsby]

:) I live in Pineville.....I am so new to IC that I am not even sure about the meds and such....Elmiron is my first ever...before that, I was repeatedly misdiagnosed as having bladder infections...I have an appointment tomorrow. Is it possible that IC could have an effect on other problems, such as ovarian cysts? I recently had an issue with that as well.. :headbang: ..and so, I'm going to discuss all this with my dr.....I have to say, that I never realized so many people are suffering with IC.

[MakinIT]

HI PS! (gotta shorten your name) My IC started after a surgery to remove my left ovary. (My uterus and right ovary were already gone.) MY problem wa so many surgeries had left adehsions. My ovary was stuck to my bowel and my bladder, ureters...blah, blah..so the surgereon (who had done my hysto..which was supposed to be laproscopic throught the vagina but turned out being opened at the tummy because of adhesions on it ..due to other surgeries..."sigh") So, she tell me ahead of time, piece of cake surgerey, should only take 45 minutes. I will just cut on your old hysto scar. WEll..I woke up 4 hours later, not knowing what happened. My surgeon greeted me in recovery still all sweaty. She had to call in an assistant AND also get someone to bring in an anatomy chart because all my "stuff" (viens, ateries, arterioles, venuoles, ureters, etc...were wrapped up in old blood....guess my ovary had blown a few times) and she spent all that time untangling me. My 4 inch scar was now 12 inches...

Anyway...I'll write more to you later..my husband needs the internet. So, I can talk to you about meds...Basically It all depencs on how cooperative your doc is and how well read he is.

Tracey

[codyryonwoodward]

PStalsby hey you live about 2 hours south of me. Anyways yes IC can cause problems with other diseases. I also have problems with ovary cyst. I have major problems with allergies, migraines, female problems, depression and anixety. Never had problems with this stuff until I developed IC. But of course at the time I did not know I had IC. I think I got IC after having a C-section with my son in 1996 thats when my problems started. I started going to my OB/GYN for pelvic pain problems with my periods and so forth. We ended up doing a hysterectomy in 1999 thinking my uteurs was the problems, but as we found out it was not. It took my 5 yrs ju st to get a diagnoses. I also started out on Elmiron but I had a side effect so I had to stop. Do they have you any other meds besides the Elmiron? Do you have a good doctor in Pineville? I am waiting on my SSD which I got approval for in December to be able to start going to a different Urologist, right now I have to go to LSU Med Center in Shreveport. I see a great urologist there hopefully when I get my insurance from the SSD I will be able to go see him at his private practice. Best of luck

[Dianne]

24/7 here with mid-afternoon being my worst time. I can't tolerate oral meds. When they hit my bladder, it's way worse than it already was. I take motrin 800 mg. at bedtime plus 300 mg. of neurontin. That's all I can handle. For some reason I can't explain, mine goes through the ceiling 4 mins. after I lie down. Nobody knows why.

[MakinIT]

Hi again PS....and Cody, my goodness...did you like, use all your son's name's? your history sounds kinda similar to mine. I have allergies (like almost all antibiotics) migraines, female problems only because of adhesion problems dating back to getting my tubes tied. ( I scar big time...I really tried to talk my hubs into a snip snip but he wouldn't hear of it.. I sometimes wonder if I would be in this place if he had that done, instead of starting me down the ugly road of adhesions...that led to scaring in my in tubes and intestines and actually screwed up my appendix. That excitement led to problems with massive periods and ugly bed confining periods...took out the "stuff" because nothing moved due to scare tissue..., then finally had that last surgery in which my body said "enough", you are done!!!!!)

Anyway..PS..about meds...Have you been prescribed anything else yet? Like, I take Atarax (kind of an antihistmine...really strong...for one "theory of IC...allergic response, which makes sense for people who have had the biopsy and come back with high levels of Mast cells in their bodies....which mine did. They did the Cysto/distentension under anastetia (which you should have done at some point) and found my bladder looked a little red and irritatated, somewhat "patchy"...the uro at that point didn't want to make the dx...he felt it was such an awful disease to pin on someone he was doing me a favor since it was kind of border line. However, he did take the biopsy (Any my symptoms were extreme...I was so depressed that week, what the hell was wrong with me) and he called me back less than 5 days later and said...whoops...guess what...your mast cell count is through the roof!!!!! Your case was discussed at a medical meeting today and we all agreed wholeheartily you have IC. But, despite the awful pain, he didn't want to give me anything...did try ditropan but as he suspected with IC patients, it makes it worse. told me not to eat certain things, try Elmiron, atarax, if it really hurts, here's some vicoden but I'm only filling it once. Oh and btw we have a woman IC uro specialist here. She's wonderful, I'm turning your care over to her if you'd like. (Thanks god) He was a nice man, just old and old school. The Elmiron immediately made me lose my hair and made me very sick. I thought, bad news...If it's making me lose my hair and my breakfast, what else is going to do to me.?...She discussed intra bladder washes, that included a numbing agent, steriod (to rebuild the wall) and DMSO (I think it strips the old wall) I told her I would not do DMSO. I have serious reservations, especially with my allergies and the way I reacted to Elmiron, to putting an industrial solvent inside my body. We did weekly intrabladder treatments through a catheder. worked ok, the numbing agent was nice. They eventually taught me how to self cath, and wanted me to do 2x a day numbing agent treatments but it turned out not so good for me. (my bladder got way too irritated, even when we went to a pediatriac size cath.) You can read more about installations at the Interstitial cystitis Homepage. They have tons of up to date articles about treaments, regimens, severity, how disabling ( for me, it's been awful, but most women have an initial terrible period and don't hear much from their bladder unless they stray from their path of diet and drugs)

At this point, most of my "therapy" is pain management. I would like to go back to work. I'm a special education teacher. I dream about my klds. (I work with them for 3 years at a time so really get to know them) in the AM I take 90 mgs. of morphine, 50 mgs of topamax (a drug that blocks pain before it can travel to the brain...kinda makes you stupid though.) I also take well butrin at that time for depression. Mid afternoon, 'nother dose of wellbutrin. OH yeah..also in am I take estrace since no female body parts are the so keep me in check. At night...A nother 90 mgs of morphine, 400 mgs of zonegran (RX'd by my pain management doc....he also tried to implant a spinal stimilutor...didn't work b/c my pain nerves have decided to wrap themselves around my motor nerves...increase electrical input, I go into a spasim...pretty uncool) another 50 mgs of topamax (oh yeah, zone gran works like topemax) and 50 of atarax. I am asleep w/in 20 minutes but I wake in 2 hours then every hour after that.

look into pelvic floor therapy and some alternative. I also do chropractic..I really hold myself in such a way that I hold my body to protect my tummy...my chiro, each week, untwists me and lecures me on properposture. He said he's never seen anyone with their pelvis so messed up, without a fracture. "sigh".

Just keep reading.....Often, if you have an open minded doc,and you have a better idea than they do, just from research... they will help you try it. They don't have time to read up on every disability/ailment that crosses their desk. Fortunately, my GP has done quite a bit so he can feel comfortable prescribing my pain medication.

I always windup yapping too much. It's a fault of mine, you'll see that anywhee on the board...you can PM me forany specific quesions if you want, or email me at solfish39@comcast.net. it's wierd about Yahoo though. It take the messagees but won't let me re

[PStalsby]

Thanks for the info, ya'll....I went to my doc today and it seems endomitriosis has now entered the picture....on the other hand, though....cysts have all gone. I couldn't believe the Elmiron hasn't continued to help most of you....For the most part, it helps me alot.....with almost no side effects (sometimes it makes me jittery).....that is the only med i've been on since my diagnosis a few months ago.

[.T.]

I have pain every single day. Sometimes it's more of an ache or cramp type of discomfort- Those days I can get things done still, but most of the time I have extreme pain. Sometimes to the point I can't stand up at all, can't walk, can't do anything but lie there on the floor rolling around in agony. I was on Vicoden everyday and I limited that to no more than two a day. I have oxycodone for the serious pain but I hate how bad that med makes me feel- It may help with the pian, but I often feel so drunk and dizzy or sometimes just sick to my stomach with it. I don't know how to deal with this pain and my doctor has no idea why it is so bad for me. Although I've had 7 or 8 heperon treatments done now and they do seem to help ... my last treatment was bad though. I was having such bad bladder spasams that the pediatric cath would hardly go in, no urine came out and they had a very difficult time getting the meds in... so anyway--- Thats where I am now-- got to get a handle on this soon

[DaNa WaNa]

I am so glad that someone posted something on everyday pain. Im not happy yall are in pain but no one really believes i am in pain everyday all day and so it really helps to know that im not the only one and that yall go through the same things...


:)

[cookiecat]

I have severe pain 24 hrs a day 7 days a wk, it never ever stops. Mornings are worse for me too like other ICers out there.

[sunshine8790]

I'm also in pain daily since silver nitrate instillation in February, but I'm sure I'm not in as much pain as some of you. I tried Elmiron, but I haven't taken it for 2 months, because I had too much hair loss. Now, I'm just on Urelle for my bladder. The doctor wanted me to try Elavil or Tofranil...but I'd rather suffer than gain more weight.
I have oxycodone but haven't taken it because I'm afraid of becoming addicted to meds.

dx-IC July 2004
dx-Endo April 2006

my meds
Urelle- Interstitial Cystitis
Zelnorm- IBS
Singulair- Asthma
Mobic- Arthritis
Oxycodone- Pain
Ambien- Insomnia
Levsin- IBS

[Babs RN]

I continue to have everyday pain. I take Oxycontin three times and day and that alone has given me some of my life back to the point that I have begun swimming again. I have Ambien CR for insomnia and Baclofen for spasms as well. I went off Elmiron a year ago after being on it for 3 years with not a whole lot of success. My pain is worse in the morning and at night.

Hugs,
Barb :grouphug:

[MakinIT]

Sunshine; You have likely heard this but I'll say it again, TAKE YER PAIN MEDS DARN IT. It's like Donna has said to me when I was moaning about being on Morphine, (MS contin Extended Release) ..I had to go off for a few days due to an alleric rxn I was having and I WAS SICK. But I was also hurt so damn bad in my bladder and left side. I mentioned that my rxn to being of the morphine was an addiction, and while it is true, it is the physical. I don't crave it. I dont want anything more than I need tokeep the pain low. I get no high from it. Look at it this was. If you were diabetic, you wouldn't even think twice about taking insulin. High B.P.? Again you'd take you your medication. Now, your pain meds are not optional. You need them. You can't heal without them and your life will be misery, unless you take care of the pain; I can at least do some housework, run errands visit with friends, and Yap on the internet.

BTW..I am SCARED to go off the MS Continl I had a few days to taste withdrawal and I felt like my skin was being peeled off. That was day 2. Apparently, it can much worse. I guess if you have enough money, you can fly to LA..they knock you out..sedate you for 3 days. You go through all the pain while under and they monitor you. You wake detoxed, not feeling a thing. Alas..if I ever get over the pain in my body, I'll go through icky method.

EEKS gotta go..took me an hour to type this as I keep falling asleep

[JenG]

First of all....Hi Everyone! It's been awhile since I posted. I've been busy going to new doctors, taking tests, MRI's etc., ever since I finally switched insurance.

After all of that - still no pain relief. Pain everyday - all diagnosis unclear. All tests came back normal so all of my pain and symptoms are from unknown origins. My problem lies with the fact that I have so many related syndromes that whichever pain reliever helps for one thing - it doesn't necessarily help with the others.

My IC pain can be helped somewhat with bladder instillations, and the combo of elmiron, atarax, and cymbalta. My fibro pain is helped with zanaflex, darvocet, and vicodine. My muscle tremors and twitches cause pain only relieved by lidocaine patches (too bad I can't dip myself in lidocaine!).

The problem is some of these meds seem to react with others, while some even cause other symptoms to worsen, so I have to start each day deciding which symptoms to lessen, and what to live with!! It is soooo frustrating.

Pain everyday - usually - but which pain to put up with is my dilema!

[sandramac]

I definately have most pain, during ovolution and just before period for about 10 to 14 days before!with no relief! Hugs Sandra

[sandy w]

Lori,
I have the Interstim and I had it put in for incontinence. I also have IC and the interstim has not doen anything to help the pain that I have experienced from IC. I have been on 8 mg of dilaudid 4 times a day and although that is not always the answer for the pain that I am in it has helped quite a lot. If pain management is what you have to have to make it through the day I have found that this is what I will do. I also do not favor the thought of being on pain management for the rest of my life but until they find a cure for this disease I feel as though there is little option. Like you I have days that I feel down and out of sorts with my life as a result of this disease. I cannot offer advise because I have not found the golden answer to get through this but I take it one day at a time and try to remember that science is always coming out with something and maybe a cure is right around the corner for us. If nothing else we have each other and I since finding this group I feel as though alot of my questions and concerns are also those of the others in the group so I know that I am alone. I have had alot of various health issues over the years and been through quite a few surgeries and nothing has stopped my as quick as this has, but I am not giving up I'm only 46 years old and I have so much left in my life to do. Maybe like the characters on the Wizard of OZ we'll find our own wizard to make things better LOL LOL I find alot of comfort in reading the posts here and knowing that I am not alone has been of help to me......sandy w

[sunshine_77us]

I was having pain everyday but have been able to control with diet. I try to stay away from all preservatives and dyes's. I still have pain through out the month lasting at least 7 days pretty bad if I eat something I shouldn't. I take ultram atarax, allegra, pryidum plus, ditropan xl, diludid, demoral. I do have a question for you all. This week I have terrible urgency. It's been terrible trying to work, sitting at a desk all day with this. Usually I get pain and not the urgency. Could the urgency be caused from something I ate and what can I do for it besides the ditropan. As bad as the pain is I think I would prefer it over this. I have been in misery all week and it doesn't seem like it's going to let up. I appreciate your answers.

[debbyakamom]

chinacat, I have basically the same symptoms. Like knives going through right to my back also in my vulvar area i feel like i hve a knife stuck up there. Me too, can't wear any pants, even underware is too much. If I have to go out it is excruciating just to be in pants for even an hour!!! I rush home to get in my nightgown with no undies. What a way to live. This is awful. I can't wait to find a Dr who will treat me!!

[marsi4]

I've had ic all my life for 34 years. The last 2 years have been ic hell. I have severe to moderate pain 24/7. Currently on 20 mgs of Oxycontin, an anti-depressant, and neurontin. It doesn't touch my pain. I need to have my pain meds increased, but I don't want to be heavily sedated and still have pain and unable to function. I,ve had it, I hate this disease and I'm looking for a doctor to do surgery.

Marsi4

[MsB]

Hey Lori,:)
I too experience pain on a daily basis:headbang:

Some days are worst than others, also with constant pelvic pain, I'm having severe pain in my lower extremities. It hurts constantly. I take Lortab 10 and lyrica for pain, but it's not very effective.

I try to keep my mind on other things and ignore the pain(grandchildren):smile tee

God is still in control. Keep you in my prayers:pray:
________________________________________________
Belinda in Bama

[sandy w]

Marsi4, I can relate to your desire to have surgery and have thought about the same. I have thought about having my bladder removed and ask about the internal pouch that you empty through a catheter a couple times a day. When I think of the meds that I am on and all the pain that interfers with my life I find that answer more appealing. With the bladder gone so is the disease and trips to the bathroom 8-11 times per night. I have the interstim for incontinence but Friday I will have it adjusted because I am having problems staying dry at night and running to the bathroom peeing the whole way is depressing. I have been wearing depends at night but ran out so I will have to replenish my supply. I never thought waking up dry in the morning could mean so much. I am on dilaudid 8mg 4x a day and sometimes that does it and some times I find myself having to go up a pill before the day is over. This disease is worst than anything that I have had to cope with throughout my life and I have had serious thoughts about having the bladder removed. Sandy

[miss2u]

Hi, I'm very new to the internet,so I don't really know what I'm doing but here it goes. I have had ic for 8 years. I have only been diagnosed in the last 2 years and have been through pure hell. I had a Dr. in the past claim I really was not in pain or had any other of the diseases and syndromes I have. I was sure I was going to die. I am still having problems with Dr.s believing I could possibly be in this much pain. You people are like a life jacket, now I know I'm not alone.Thank you for sharing your story.Bless u.
ic,ibs,gastric reflux,panic disorder,chronic depression,sciatic nerve, and a gyno told me without doing any tests that I have a touch of endometriosis.
meds:3mg hydro morphone contin 2xdaily
2mg dilaudid 4xdaily
remeron 45mgs 1 daily
1 mg clonanzepam also 1 daily

[navemj]

miss2u,
I am so sorry that you are in so much pain and no doctor believes you. I think we have all been through that. Have you looked on this site under physicians to see if you can find one in your area? That is the best place to start. Just know that even the doctors may not believe you, we all believe you and the good Lord above knows everything. It is so important to find a doctor who believes in IC.
Navemj

[celine]

Hi Group.24/7, that's me.Constant,all the time,terrible,depressing,hard to function,wondering why me,how long,forever?, and then thinking-I cant do this FOREVER.But,I'll admit, jumping on here everynite,even for a few minutes,helps me to keep going, even in the middle of this outrageous storm! I pray,pray,pray, and everyone prays for me,and I know it's all in Gods good timing, but really sometimes (no, most of the time) its so so SO hard to keep going. My Pain doc gives me methadone (2 years now),and I havent gained a pound,probably lost actually, lexpro for the depressing part of the disease, the patch 25mg 2days, ativan at nite as needed. I work full time,and raise my child with my hubby, but boy,how I get up everyday and work,I'll probably never know.One foot in front of the other,and knowing while I'm crying inside that it must be done. The hardest thing for me is that I love my life and EVERYTHING about it, EXCEPT for my health.And I cant do anything but wait for a cure. So thanks for everyone's posts.These are the kind I like, to really be able to relate to others with the same problems and talk to friends that care and lift you in your time of need.God Bless, Celine

[miss2u]

Dear navemj and all ICers,
thanx for the kind words I so appreciate them at a time when I feel very depressed. I am sure all of you know how I feel as I have read your posts.I cried through many, as I can relate to the unrelenting pain and all the garbage that comes with it. I try many ways to distract myself from the pain and now I have found another, other people with ic. Ironic I have found some relief focusing on what's causing this horrid pain.

Thanx and bless u all :pray:

[Freckles]

Hi everyone,
I've had IC for about 8 years. The medications I'm on right now are elavil, hydrozyzine, neurontin, elmiron, valium, and today I started on morphine. The morphine isn't quite cutting the pain so my doctor will have to up the dose I guess. I delayed having instillations all of these years because of a comment my first urologist said to me years ago. I was in horrible pain last week due to the change in my pain doctor. I was being seen by a female pain doctor in Tampa and I was not happy and found another doctor. The first doctor would not release my records so the second doctor wouldn't treat me. I went over a week without any pain meds. I'd love to blame the doctor, but chances are she didn't know what was going on. Her staff is horrible. They treated me so poorly and when I begged for my records they said it could be two weeks. I finally called my urologist who urged me to have an instillation. I had one and for about 4 hours I was pain free. It was the numbing agents, not DMSO. I went back the next day and had another. He would not give me pain medication (pills) either so it was another 4 days before I got relief. I was in tears, just sobbing basically beggin for help and still he said no. The worst part of this disease is getting a doctor that cares about you. Over the course of my illness I have discovered that most of the doctors I have seen are definitely in it for the money. They have no sympathy for us. They don't want us, because it's hard to fix us. I know I sound bitter and I need to get over it, but it makes me so mad to know how I suffered last week when I had a urologist who could have helped me but refused. Anyway, when I finally saw the new pain doctor he put me on morphine and it's not helping very much. :-(

[MakinIT]

Hi Freckles

You have had a very rough time! I am so sorry. I too suffer some amazing pain that, after nearly 4 years, hasn't gone away. They started me on some "take as needed" pain meds, but quickly realized that I needed more. My GP has known me for years, through major migraines, serious surgeries, and I did see a wonderful Uro (female and young) and good pain doc...although conservative with pain med scripts. My GP has been handling all of my pain meds, with other doc inputs. He finally came to the conclusion I needed morphine, long term (ms contin) and I take 120 mg in Am and 120 in pm. It took along time to work up to that dosage. I also take valium and percocet 10/650 for breakthrough pain. My docs have been pretty good. I've had to "smack around" my pain doc and make him realize sometimes pain can't be overcome by deep breathing and visualization. He's better now. ha, ha. I also get instillations, but have to self cath after because my bladder is very uncooperative. The instills are marcaine, heparin, and a steroid. I refuse DMSO.

Gotta get my kid up. I know it's rough, geez I wish I could help. Have you had any Pelvic Floor therapy? Sucks kinda but it actually helps. Go in and stomp your feet and make a scene inthe waiting room. Not my style but I was in so much pain once I did that in once docs office who I was leaving but needed records NOW!

good luck

[sarahjmiller]

i have pain nearly every single day - since last fall. i do not have burning upon urination, nor does anything i eat or drink affect me. alot of times, sex sets it off.

i hurt from the bladder area down thru to the v area which alot of times feels like it has a 'migraine headache' down there. it's a 'sick' feeling and alot of times makes me nauseaus.

i try to just deal with it with a couple of Advils every so often.

[kkwhitney]

hello,
I was so happy to see this post. I haven't been on in a while but that is due to the fact that I just feel like everytime I got on here I was just venting and complaining about how I felt and the fact that I just never feel better. I live with pain everyday also. I hope this doesn't sound bad but I am so glad to hear that I am not the only one because it shows me that No I am not the only one and it is not all in my head. I have taken Elmron everyday for the past year and I still have to go in for bladder instills every month. I haven't tried the self catherder because I am a little scared of that. I have so much pain when they do it at the dr. office. I just don't think that I could do that to myself at home. Somedays I wonder if I will ever feel normal again. Sometimes I just sit down and cry because of the thought of living in this pain forever. I take precocet when it gets to be to much but mostly I take ibprofin and use heating pads. well thanks for the post and I hope that we all find the relief we need.

[blueblondie1121]

just thought i would let everyone know the problem i had when i used pyridium for a long time. it started making me quite sick on my stomach. so decided to come off it for a while.that is when my eyes started pouring out fluid all the time could not do a thing for it pouring out.it did it for weeks.the doc i went to said most likely it was the pyridium. cause it does effect the tear ducks in the eyes.is that not weird or not. so now i use it only when in a lot of distress.i hope it helps you all :woohoo:

[racegirl82006]

Yes, I too am in severe pain 24/7. I have some very short periods of relief throughout day, maybe an 1-2 total in like 15 min increviles (not sure on spelling). I have yet to find relief. I have tried everything from heating pad, drink only water, loratab etc. not tried strong enough med to reduce pain. loratab only barely helps which is better than tynelol. I barely eat. Tried the diet. I have had this pain for 6 years, only gotten worse over time. Just got dx. Maybe at appt soon, I can get a understanding Dr, to help stop this pain. I know how yall feel. This everyday pain is just for someone to bear without help. Dr's need to have more education on IC. I don't see how constant pain, fatigue etc is any different than cancer pain. There is no telling how many people every year committ suicide from constant pain. Dr's should be held responsible for allowing people to suffer. Just because some people are druggies don't mean we all are, just because of their lack of knowledge.

[debbyakamom]

I can't take this anymore!!!:help:
Here it is 2:00AM and I'm wrenching in pain!!! Why?? Because my Drs will not give me what I KNOW works for me.
Yes it is the dreaded drug Oxycontin!!!
I am so sick of hearing how I'm addicted or going to get addicted, but how can life be worse that this???
On that drug I can FUNCTION, don't they get it???
I just don't know how much longer I can go on with this pain that I KNOW is TREATABLE!!!!
I've talked to people around here who know addicts who are getting scripts for no pain at all!!!
Where is the justice for us REAL pain patients!!!:cussing:
I am being refered to yet another Pain Clinic, do I beg for my remdy??:bow: :bow:
I just am at a loss. I sure wish I had an advocate to go with me.
Anyone live in the Quincy/Boston Area who would like to advocate for me???:bow: :bow:
Because I'm getting no where. I have been crying all night in so much pain.
What is wrong with these Doctors?? I tell them what works and they don't listen.
I can understand why there have been scuicides I'll tell you that. There's only so much pain a person can take.
I AM REALLY SERIOUS ABOUT AN ADVOCATE IF ANYONE IS AVAILABLE.
PLEASE LET ME KNOW.:bow: :bow: :toilet: :toilet:

[racegirl82006]

i know what u mean girl. for 2 days, i have been crying almost straight. i wish someone who stab me in bladder, so they will have to fix it. ER's only help acute pain, no matter how bad the flare. My insurance is used up and having to slowly scrape money up for dr appt. i can't work. all i can do to take care of my kids, of course i hurt from it, but some these dumb dr's don't care if pain has taken away my life and messing with my kids childhood and missing out on some things cuz i can't do. :help: :bonk:

[MakinIT]

Oh you guys I just want to cry for you. In fact, my eyes are welling up right now because I have been in horrid pain myself and have the luxery of wonderful doctors who don't care about the "addiction" piece. as they all say, we will cross that bridge when we come to it. I thought Iwould be going back to work this fall after 3 years away from teaching and I then 2 major flare ups and I am back to square one. (I was actually pain free (except for my daily morphine) for 5 weeks and had hope). I take 120 mgs MS contin AM and PM daily, have for years, and 150 mgs daily of Topamax for nerve pain. In adiition, my reg. doc who prescribes this, with the consultation of the pain doc., gives me Oxycontin in high strength for Breakthrough pain. My Uro gives me valium because of spasms...(also have to take alot of stuff for stomach irritation and allergies...my IC is from "EXTREMELY HIGH MAST CELL COUNT" I say that in largeprint b/c my uro said she had never seen such a thing.

ARE there any doctors available that can give your primaries info on addiction and pain? for me, I can't even tell I'm on any meds (like, no wierd feelings) because it does what it is supposed to do. When I have severe pain, It makes me sleep, but that is what they want for me to do. I know your resources are limited. Have you started the long and ugly journey for SSD beni's? Fortunately for me, I have long term through my former job so they have been covering me, but I started 2 1/2 years ago and am going to finally get my hearing in sept. almost all money will go to Insurance and Lawyers, but I will get to keep a portion from my childrens past benifits. See if you can find a Lawyer who specializes in this. They handle all the BS and don't charge a thing until you win. (If you lose, nuthin')

As for now, I don't know what kind of alternatives you have in terms of docs and healthcare and such. I have done two rounds of Pelvic Floor Therapy. HUGE help. I put hot pads on my tummy , but sometimes need ice packs around my pelvic floor (ok..my crotch) I also often have to self cath b/c I can't pee, I am spasming too hard. Anyway, I also have pelvic adhesions from many surgeries so I see a chiro who tears apart my adhesions in my tummy. It sucks.:cussing: but it helps. I don't recommend Accupuncture but some people find relief. I did for migraines but not this.

If you are only seeing a Uro, they tend to be very stingy on pain meds. I don't know why. I have stumbled on great luck and come accross a gal who is one of the top 5 uro's in Portland/Vancouver (oregon,Wa) area. There are alot of uro's. She is wonderful and I love her dearly. She will call any time day or nightl

Get what research you can on addiction and pain relief. In alot of cases, not giving patients the medications to make them feel better makes them get even sicker.

gotta go...it's late.

Take care..write back if you need to.:angel:

[Freckles]

I'm so sorry you are in so much pain. I can relate. I just went to my pain doctor this morning and had my prescription changed. I was on Avinza I think it's called which is slow release Morphine. Now that I've lost my job because of this disease I can't afford that. Luckily I was able to get another morphine that is only $7 a month. It doesn't take my pain away, but at least I can function. My heart just aches for you because I know how horrible it is to be in such pain and screaming out for help but no one will listen. I'm thinking seriously about forming a non-profit advocacy group here in Tampa. I am going to look into forming one and writing some grants for funding. I would dedicate the rest of my life to helping women with this disease if I could find the money to do it with. I would love to be at appointments with women and be their advocate for pain care when they are in too much pain to argue with a doctor. I'm been in so much pain that driving off of a bridge was really starting to appeal to me. Luckily I have children and that always stopped me. I will keep you in my prayers. Please know that if I were in your area I would be there for you.
Karen

[Babs RN]

Karen,
Are you in FL?

Hugs,
Barb:hi:

[sarahjmiller]

I had been having 0 - 1 pain since Sunday (when ironically i had SEX!!!!:woohoo: :woohoo: :woohoo: !!!!!) and i was thinking i might be home-free from a sex-flare-up of pain, but i'm sitting here today (Wed.) and for NO REASON, i am feeling bladder pain (which is now going down to the 'v' area) of at least a #2 or maybe 3.:bonk: i wasn't even doing anything; just sitting here at my computer at work!!!!! Sure do hope it just goes away for NO REASON!!!!

[MakinIT]

I was going to write something...But I just don't know what to say anymore. I'm so sad with all this pain....I sad I can't work...I'm sad there are still idiot doctors Who think there is no pain or worry about addiction. I hurt so bad sometimes I can't even see straight. DEBBIE: Just keep kicking...these docs are such asses. Like I said, I'm lucky, but still sick. I am at a low pt again and want to just dry up and blow away....It wears at you. But you have to focus on something in the future that you want to see.

Tracey

[racegirl82006]

yes it does feel like the pain eats away at u. just wears me down. i have no energy and constant pain. i absolutely hate this. i know what u mean about the bridge. my kids keep me trying to keep going. it would just be nice to have some pain free days.

[marsi4]

http://www.ic-network.com/images/presidentsaward2006.jpg
(This post was nominated for a Presidents Awards and I think that it deserves it. Marsi clearly understands the issues and controversies around pain care. IC patients can have intense, severe pain equivalent to cancer pain and, like a cancer patient, IC patients also need compassion and support.

There ARE good doctors who treat the pain of IC, as represented by Dr. Dan Brookoff, who recently appeared live in our 2006 IC & PBS On-Line Patient Conference. Dr. Brookoff has been treating IC pain patients for two decades.

We also have seen several new laws passed in the United States and many states that require pain assessment and care. I helped to pass the Pain Patients Bill of Rights here in California. We're also now seeing some doctors prosecuted for not providing proper pain care. If you feel strongly about this, consider writing your own state senator and representative and ask them to sponsor a pain care bill in your state.

I think that IC advocacy is on track too. Both the ICA and ICN have made great strides forward in telling the needs of IC patients, most recently this Spring in a documentary on IC being broadcast, right now, on many PBS stations across the country. Thank you Marsi! Well said! - Jill Osborne, ICN President - July 3, 2006)

If they can't cure our condition the least they can do is treat our pain. How is cancer pain any different than ic pain? Both these diseases cause severe pain which requires narcotics to treat or manage. That's why there are pain clinics and pain doctors for patients that suffer from moderate to severe acute pain or chronic pain.

When are these irresponsible, malinformed, ignorant doctors going to realize that ic is a real disease that is extremely painful, debilitating, and crippling? Any pain doctor who denies someone pain treatment is immoral, uncompassionate, unethical and downright cruel. Such doctors should not be practicing because they are allowing patients to suffer and are leaving them with little or no choice but to want to put an end to their misery.

I believe that what some of these doctors are doing is criminal. They are indirectly responsible for those who have lost their lives from total despair and having been denied pain meds, but we all know how difficult it is to charge them. These doctors should be held accountable because they are not saving lives, they are destroying them.

What it comes down to is a lack of knowledge, education, insight, funding and advocacy for ic. Ic patients are being neglected, ignored, mistreated, misunderstood, discredited, misjudged, devalued, disrespected and denied pain treatment often times byour medical system and this needs to change. This discrimination needs to stop now from doctors who want to play god and decide which patients need, and deserve to have their pain treated and which ones don't.

All pain patients deserve and need to have their pain treated when they are afflicted by any illness that is life altering and disabling. It's so hard to believe and accept that doctors in this day and age still don't know which illnesses cause severe pain and symptoms and continue to let those in pain suffer in silence. WE need to have our voice heard and our needs answered and do away with ignorance.

Chronic pain needs chronic pain treatment, and for those of us in that category ,we need never worry about addiction because we need pain meds to live and will probably never be painfree to have to worry about addiction, withdrawal symptoms, or getting off pain meds. I wish that doctors can get that and treat us with some dignity so we won't have to beg for our medication which is necessary for our survival and existence especially when we are struggling and fighting every minute of every day to stay alive.

I think pain doctors should know that preserving one's life is a priority and enabling their patients to be able to function and have some kind of a life is essential. Everything else is secondary.

If you are denied pain treatment from one doctor quickly find another. I know how long the wait is but have your voice heard by going to as many doctors as you can until you find one that is willing to help until you get into a pain clinic. Don't allow yourself to suffer from ignorant doctors who don't know anything about ic pain.

Marsi4

[MakinIT]

Marsi: That is well put and is the same thing I've said before. You're only getting pain relief if you are going to die...(while I apologize and am very saddened by anyone's pain with passing, Chronic pain sucks the very life out of a productive parent, worker and friend.) I've been so isolated the past 5 years, I often find myself musing the "what if's"....I get pain medication and yet the pain still overwhelms me. I am on MS contin and other "fun stuff".

Anyway..all keep your chin up and like I said, when I get very down and contemplate dumping all my pills down my throat, I focus on the "what if I wasn't here?" My kids keep me up...

[mare mare]

Marsi!!
You Go Girl!! :D

mare mare

[MakinIT]

Do you know what really frosts my rear end? And I am going out on limb b/c I know many of you likely think b/c it's written "illegal" in a book, so it should be...But sometimes, even with all the medication I can use my pain is still unbearable. (I was a 10 year special ed. teacher, the next teaching year ...when I got sick...I was going to be a department chair and start training for administration) so, I'm not a drug addict...(Ok..morphine now, b/c of the years..gimmee a break..) but I turn to the pain relief of native americans from the NW to South America...and I only use it very seldom. It has to be pretty bad. I can take alot of pain. but when I'm doubled over and sobbing, my husband helps. I have to have an inhaler nearby because I'm asthmatic...(Many years of being trapped in a car with parents who smoked, when I already horrific allergies.) So the decision to smoke the stuff doesn't come easily. My doc is aware, and he agrees with it but with caution b/c of my allergies. I hate it, hate the pain, hate everything about it. This is my low point with the disease. When I have to resort to this so I can sleep and don't spend a night awake and sobbing on the couch.

Marsi I just reread your address above and really it is so well spoken. You should find a way to publish it, or DING light bulb..I know what I'll do...Nominations anyone?

Tracey

[lindavk]

Marsi4 - thank you so much - you said it all and so very well!!!

[marsi4]

Thanks guys. I am so upset at having to wait 5 months to get into another pain clinic. I have moderate pain 24/7 but all of last year it was severe. I just wanted to share my thoughts and experience with chronic pain and pain doctors, who have failed some of us, and continue to violate our rights and deny us the right to live with some dignity and function. Thanks for your support I realy needed it. I wish I could express myself this well when I get to see my new pain doctor. I 'm usually at a loss of words and pretty much an emotional wreck and overwhelmed by my tears and sadness that I could hardly speak or think during my appts.

Marsi4

[racegirl82006]

well put i think that should be sent to all the a##holes in washington, to make sure it got to the right one, lol.

don't blame ya, it shouldn't be labelled illegal if Dr's can't do anything legally.

just stupid uneducated Dr's. I wish i had felt like staying in nursing school then go to practioner school.

[IC SARAH-CPP]

I am very upset reading all these posts too. I know what it is like being in pain all the time, with no relief in sight. The only thing I can say is to never give up. Even if you go to another doc who says no help, just keep trying. I saw so many mean docs who wouldnt help me, until I found my dr.right. I almost had no hope when I went to see her, but she turned out to be wonderful.
We start to feel like ALL doctors are like this. But they arent. Many doctors are up on pain meds and know how to prescribe them.
Please dont give up. Then they win!! The only one who loses out is us. Try to hang in there.
Love Sarah

[JenG]

Well I just got my pelvic ct scan results and instead of the hernia they thought I had, they found a 3cm ovarian cyst. It is on my right ovary, the same side as my recent unrelenting pain - so maybe this is the answer???

Anyone ever have an ovarian cyst removed? Did it help the pain or make it worse? I am leary of any surgery ever since my partial hysterectomy (to remove my uterus) set off my IC pain so badly.

My IC had been sort of under control before all of this and I am thinking that it wasn't my IC acting up again, but the cyst?

Thanks for the info!

[MakinIT]

Marsi4: if you get all DUUUHHH around docs like I, and many of us can, print out this page....take it it with you, especially that one #115...well done and said. attach research on pain management in the chronically ill and back up with web pages. Docs especially like Journals written for them...(A.M.A., A.J.M., blah, blah...pain docs themselves get into anestesology..can't spell..writings so if you can find articles in those journals to support you)...If you see an article in popular press, rather than cite that magazine (docs will turn their collective noses up at ladies home journal) find out the source of the article. find out more about the subject of the article.

Just thoughts...its what I've done, but I'm a researcher..at least I was. Doctors like to see hard facts. (I gotta sleep, I almost typed docs like to see hard farts.)

g'night t'a'll. It is 10 pm, 90 degrees, I am sleeping in my birthday suit, hoping the pervet across the fence isn't having his nightcap on the patio. We Northwest folk don't do well in temps over 90...me...I get grumpy real fast over 80; I'm trying to hitch a ride to the coast. it is 67 blessed degrees, with foggy skies..I can wear my fleece coat and sandals with socks. (I like to shock my friend from Florida) We hippies here....bought my all purpose shorts and water sandals today...still crabby though...my daughter swam all day yesterday and wanted to TAN for gods sake. She's 16 always had a good head, but she didn't wear sunscreen. I spent 3 hours in ER tonight because she has 2nd degree flipping burns, she was dehydrated and needed a bag of fluid..(geez..you woulda thought they were tearing her left leg off) and she got some codeine. The doctor told her she wasn't going to lecture her because she already knew how stupid she was. She's worried about peeling and looking gross and nasty for her big third date with a guy she adores. (They've been holding hands...now they may kiss...she's worried he won't want to kiss an onion.) ah...life jumps in and protects my little ones.

Have a good visit with docs and take my advice.

[weezer]

Marsi: THANKYOU, THANKYOU, THANKYOU!!!!!! Your post was heard by all of us ICers out here worldwide, and my feelings are exactly the same as your's to a tee. I just didn't have the guts to put it out, so thankyou again for saying what all of us who have been treated like criminals, want to say. I do think this letter should be in every doctors office worldwide, and in every newspaper, because it is time that we are heard. Great job Marsi!!!
Weezer

[WENDYK]

Wow, I haven't been on these boards for forever. I have had IC for over fifteen years but have been diagnosed with it for 8 years. I feel so bad because it seems that no matter how things change they still stay the same.
Same Dr.'s, same problems, same lack of total respect. I am probably one of the lucky ones. I have agreat Dr. but I still always feel like a drug addict when I ask for medication. My Dr. has never said NO, so this is probably my own hang-up. I am also tired of the nausea that comes from the narcotics.
I was in Starbucks getting a Frappaciino for my daughter, and luckily I had a little warning and actually made it to the bathroom to throw-up. I guess the thing that I hate the most is that we never win, even when we have good Dr.'s and pain meds. Sometimes life with this disease, is so hard to handle because we never get to see the pot of gold at the end of the rainbow.. I am also in pain for a good part of my day. My physical therapist said it best "pain medication doesn't really take the pain away, it just makes you not care about it" Though I am one of the lucky ones I can still work, and take care of the family. It is so hard though when the thought of having to climb the stairs to go to bed, makes me decide to sleep on the couch ( great for relationships). Oh, well thanks for letting me vent it is always such a comfort to know I am not alone.


Saying a prayer for us all,

WendyK

[weezer]

Marsi: Just want you to know that I printed your excellent post and I will carry it in my purse to doctors, specialists ( who I see tomorrow), family, friends etc. You don't know the impact it has made on my life. You wrote everything that I have thought for years. Thanks for putting it to paper.
Weezer

[celine]

Marsi4: Thank you so very much for the post.It was so so so great.I copied it and am taking it to my pain doctor tomorrow.Just to thank him for NOT being one of those doctors who wont,and dont help.Hopefully he will understand a little more even how much we go through and that this disease really is so hard and so painful 24/7.I really loved your post.I wish I knew how to nominate, because you better believe- I would! Thanks girl and God Bless. Celine

[icsonja]

Marsi,great telling of how it really is, I agree totally w/ you. I to dont want to see o r hear of anyone dying, but it is true I have thought it many times, at least their suffering will end , ours just goes on and on. And I too thank God for my children, they have pulled from the edge of despair to many times to nimber. They need me sick or healthy, so I must keep plugging along...but it aint easy.
I recentley began seeing a new Dr. and after hearing my past history and taking a look at my urodynamic syudies HE told ME taht he was setting me up with a pain managment DR and would work WITH him to care for me, he said no one in your situation shouls have to suffer without prpoer pain managment" I dont care what else he does for me, his caring attitude about the pain I am in 24/7 told me all I needed to know about him. This is the first time in the 7 years since my DX that I have not been the one to bring up pain control and you all know how many DRs a ICer can see in 7 years!
I read Jills post about the law she helped pass in CA on pain care, I dont believe TX has one, but I am going to check it out ,someone has to write the first letter I guess!
Great post and congrats on the award. The truth will set us free.
Sonja

[racegirl82006]

jen, i had cysts (filled with blood) removed. it did nothing for my pain just took it out of side. i was in soooo much pain, that the cyst really didn't bother me. my gyno told me that cysts will come and go sometimes just the bigger ones can cause more pain. good luck with yours. oh, i was sore on the inside for few days along with ic pain. good luck.

i suggest we nominate a spokesperson for each state and we send them the post for pain control. something has to be done. living in pain should be considered cruel and unusal treatment.

[MakinIT]

Huh? what do you mean a spokesperson for each state? Just curious....It sure would be cool if some of us could get together and do this.

Tracey

[weezer]

Marsi4: Just want to congratulate you on receiving your award for your
fabulous post which has helped us all. As I said in my previous post, it helped me out tremendously with doctors, specialists, family & friends. You made it easy for all of us who have thought your exact thoughts, but just couldn't put it to paper. So thank you again, and be very proud of yourself for the great work and enjoy your award. You deserved it!!!!!
Wezzer

[Freckles]

Wendy,
I know what you mean, I don't get to these posts often. I should read them more, they make me know again that I am not alone fighting this disease. There are brave men and women that suffer right along with me. I know what you mean about throwing up. I lost my last job due to my many bathroom visits, and throwing up etc. My boss (who I used to work with 25 years ago and loved) would not even accept the note I brought in from my doctor. I complained to Human Resources and of course they forced me to take a lay off. I complained of the way my supervisor had treated me since I told him about my disease and they defended him of course and made my life miserable. I was finally offered a lay off and I took it. I can't tell you how relieved I am to be out of that company. Now I am in the middle of a divorce and no job. It scares me to death because when this divorce is final I will have no insurance. I know I am not able to work full time, I'm on morphine and it's side effects are awful. I'm looking now for something part time. I could tell you horror stories about my doctors as well. They have all been terrible, and I've seen many. The hardest part of this disease for me is my kids sometimes acting like I'm making it up, or they don't believe me. Even when I'm flat on my back with ice packs on me, under me, and yes I even have an insert.... they sometimes react like I'm not really sick. It breaks my heart.

[MakinIT]

Ah Geez...I am, once again, crying for another person getting screwed by these F>>>>ing idiots. you know, you have an ADA problem, with note they should have to make some modifications to your working environment. It isn't just people So OUT there disabled covered by those laws. Look into that, ok. Meanwhile. My heart goes out to you. my ultimate nightmare/fear is facing this without help from doctors. I can't believe your HR person didn't recognise that. Take care of yourself, ok...As far as ice packs go, go to the camping sections and get the polar blankets. I found that and it is awesome...it is huge and wonderful. Just put a towel between yer skin and pack.

[Freckles]

Thanks I'll do that. I'll try anything. To be honest I think I'm running out of things to try. I'm really going to get serious and get a support group going in my area. I think it helps to talk to people going through the same thing and even better face to face.
Karen

[MakinIT]

Ok..so I've used ADA and it's worked...but who knows fer sure? I know it fall under a law know as section 504 of the American with Disabiliities Act....I will read it more closely to see about this. (I'm a special ed. teacher and I have to worry about making sure the law is followed for my kidss....when I work..)

Any feedback on that would be good, and I'll look into it as well.

[WENDYK]

Dear Freckles,
It Was So Sweet Of You To Reply To My Post When You Have So Much Going On With You. Have You Thought About Filing For Disability. It Would Help You Out Money Wise, But You Might Also Be Eligible For Medicaide. Or Maybe You Can Get Your Husband To Continue Your Insurance, As Part Of Your Settlement. My Family Has Suggested That I Should File For Disability, But I'm Not Ready To. In Order To File I Would Have To Admit That Ic Has Won, And I'm Not Ready To Do That. My Family Is Getting Tired Of My Being Sick, And I Feel Guilty Because I Can't Do Everything With Them. So Than I Force Myself To Do Whatever The Family Is Doing, And Than I End Up Over Doing It, Which Than Makes Me Flare. It Is A Terrible Catch 22. This Disease Is So Hard To Explain To Your Kids,and Family Members. I Hope That Things Start Getting Better For You, :grouphug: My Heart Goes Out To You. Keep In Touch And Let Me Know How You're Doing.

WENDY

[Freckles]

I agree with you I'm not ready to throw in the towel and be labeled disabled. My divorce attorney asked me today if I had thought about doing it and I said No I do not want to be disabled. I do need to ask my attorney about the continuance of my health insurance, but I doubt I'll be able to get it. I am looking for something part time, but I really don't know how I'll even be able to do that. I have some good days, but most are bad. I'm trying to start an accounting business from home and just take on a few clients. I'm good at what I do, it's just so hard to sit at a desk all day. At least at home I can lay down when I need to or throw up.....
This really sucks. :-(

[icsonja]

HI all, I did finally decide to apply for Disability about 3 years ago and I got it about 18 months ago, it was really hard for me mentally as well, it was a hurdle I had to get over the "disabled" label. But it is such a relief to have insurance, since no one would cover me even if I could of held down a job.
But it can take awhile to get so plan ahead and be prepared (look on the boards under disability/SSI for suggestions)
It is a very personal thing,each one in her own time, so go with your heart and when you are ready you will know.
But keep a journal and a pain/voiding diary and write in your diary when you go to a DR and what happens and how you are feeling, etc. It is easy to forget all the stuff
Sonja

[DebbieD]

I do ! Bladder has Been out for 21 Years now. And the IC is just attacting everything in its path. Been through too Many to count!!!!!!

DebieD

[leah411]

I am also in pain almost all the time. I say that, howevever, when taking the right meds I can eleviate that pain for a while, but I seem to have breakthrough pain a whole bunch. I am on quite a list of meds. The main ones being fentanyl (duragesic 50mcgs), methadone 10mg-(2 at bedtime), lortab 5/500 2 tabs 4 times a day. Dr just changed it to 10/325 because she was afraid I was getting to much acetaminaphen. I take valium 10mg before bed, and amitriptyline 25mg before bed. I also take elmiron. Dr. just tried to change me to 75 mcg, of fentanyl every other day. I was sick with nausea and major headache. Luckily it was over the 4th of July long weekend, and I didn't have to be at work. I spent 2 days laying in bed. I am trying to decide whether to give the 75 another try, but I hate to think about wasting a few more days feeling so bad. Maybe it just takes time to get used to it. Does anyone else take 75mcg of fentanyl patches? I would love to hear from anyone. Did you have a hard time getting used to it? Any side effects? Maybe it was just a coincidence that I felt so bad.

[Babs RN]

Freckles,
Please PM me. I have some info that we have in common to share. I would be glad to be the ICN Florida Pain Advocate.

Hugs,
Barb:D

[MakinIT]

I wrote a very long message to Freckles and Wendy and I guess the computer thought I was being too long winded so I'll shorten it. File for the SSD. Just make the call, the people are nice they will send the forms. See..chronic pain patients do much of what terminally ill patients do, except, well, die. we go through denial, anger, bargaining, depression and acceptance. When a terminally ill person reaches that point, they are at peace. no one is really expecting them to "get on with it...aren't you better?" about that time for me I get that response because I seem peaceful, and internally, I have accepted the pain and stopped fighting it. Of course, Ihave the help of controlled 2 drugs, sometimes when it's reallllly bad I use a little bit of "herbal blend..natures pain relief"....But it is very hard to work on Morphine, valium, Topamax...percocet for breakthrough. Then I get guilty, guilt turns to anger and denial, then depression. I'm very good at that in one day.

The man I married is a good one. However he is working his ass off to make up the 1500 dollar difference in my disability pay and what I should be making. He's an incredible speaker and in addition to teaching, he is becomine a regionally and slowly a nationally recognized speaker for kids who are gifted. (when I was teaching I taught severly special ed...ha, ha, ha) he is exhausted, health is not good and snapped at me one day that he didn't realize marriage meant celibicy. (whole 'nother issue because I have tried alternate and new stuff...he is in a rut)

I started applying in May 2003. My hearing (step 3) is in September. This Year. get moving and get started.You don't know what will happen with your husbands job, with your job, marriage...and the paperwork is laborintensive.

Good luck

[Freckles]

Thanks MakinIt,
Maybe I should start with the paperwork just in case. I know I can't go back to work full time, I just can't. I have come to realize that. I would like to find something for a few hours a week just to keep me going. I get so depressed staying at home.

I could kick your husband for the remark. I do think it is hard for our partners to understand what we feel, what we go through. We can't fault them for that. I'm in the middle of a divorce but I can't put all the blame on my IC. I just had a creep for a husband. I'm praying that God will send someone wonderful into my life. I'm willing to wait.

Maybe your husband should look on these boards when he's feeling left out and maybe then he'd try to be more understanding. We have to understand too that sexual desire when you're healthy is a strong need. So we have to be understanding as well and eager to please in other ways. I know even that's hard when you are hurting and have no sexual desires at all. It's been a while (too long) since I've had sex, but I remember the pain. Having intercourse in itself didn't hurt, but I usually paid for it for about 3 or 4 days afterwards. NOT FUN!!! Luckily for me my husband was more interested in his porn magazines, his porn movies, his porn internet, than he ever was in me and that started 10 years before I even got IC. It's an addiction for him now. It's really kind of sad.

I think I will take your advice and as soon as I get all this financial paperwork done for my divorce I'll start the disability paperwork. I'm crying just thinking about it. I'm 46 years old and unable to work and the thought just kills me. It really does.
Karen

[ICLori]

Karen, I'm so sorry for what you are going through, and I think you must be very strong for dealing with it so well.

I wanted to say, although you can't work full-time because of this disease, there might be a volunteer activity that perhaps you could do part-time, if you are well enough. I love my part-time volunteer job with the Red Cross, it's been such a blessing and comfort in my life and I feel so good about helping others. Even if you aren't well enough to go outside the home to volunteer, there might be some things you could do, like there are quilting groups, knitting groups etc. that make things, like blankets for wounded soldiers or newborn babies or things like that.

I was just thinking that it might help you feel more involved and connected, being part of something like that, because it's really hard when you are used to working, to be cut off from that and all the support and companionship that can come from that.

Blessings, and I wish the best for you.
Lori

[MakinIT]

I'm glad you are doing that but at least call the 1 800 social security # to get it started...When you are divorced it will be a very long time before you see your SSD benis. Now working part time because you are bored...I don't know...You may not get benis. (My private LTD would kick me off the rolls) SSD, once you get it, does help you try to get vocational help and has a reward program to get you back to work but I don't know if you are hurting your case by working. I am curing the boredom that leads to depression by working in my daughter's school (which is hard because I am a teacher..to be a parent volunteer, cutting shapes and stapling packets is tough but I do it..at least to have adult conversation, and to see children...they also put me to work with reading groups when I feel up to it because of my teaching cert.) My husband is a teacher, so I work in his room a couple times a month. Depends on how irritated I am with him..ha, ha. I also volunteer with my mentor from Highschool/college days. She was my boss at a resident outdoor school program, during college I'd work as an adult leader for 8 week periods (when I had no money for school) so, I go work for her in her office (she's an admininstrator now) doing brainless things. Again, I try to get once a week.

As far as getting people to stand in our shoes...I've felt that way for a long time...but you know, when my husband said that...I suddenly stood in his shoes. He's right, you know. He has a healthy sex drive. He hasn't complained about much but he is exhausted, feels like I am distant because of the drugs, and it hurts to have sex, but I have told him to loosen up. He is sooo tired he just doesn't want to think about anything...He is a very stubborn, proud man. I guess that is what has turned me around and stopped my pity parties. For now anyway. I actually had myself convinced the pain was under control and started looking for work. Then I got 3 nasty flares (they lasted 4 days each) after that and, yes, it killed me. But I knew I can 't do the teaching I do, and be stable, I am a severe question mark...and all the admins know that. I'm 41 and unable to work. It hit me when I was nearly 39 that I couldn't work and I was hysterical. My husband didn't get it. He kept saying "but you wanted to be able to stay with the kids"...I'd finish with...yeah...healthy...

As far as porn...I think alot of guys have some. Mine has one mag he buys every so often. He knows if I find it, I throw it away. Not out of anger but because if I can find it, the kids can find it. I know he has stuff on his back up hard drive (ha, ha...I just made a bad joke) But I leave it to him. Men are proven to be visual when it comes to arousal...and since I'm usual KO'd, well whatever....I'm more worried about his health.

Anyway...get started on your paperwork...tomorrow morning. call the 1800 number. (look up under Social Security Disability home page.) You'll be glad you got started.

Tracey

[Freckles]

To be honest, I'm against porn. I think it has ruined so manly familys. It did mine. I know men are visual and I guess I really don't have a problem with them looking or having a playboy magazine or two but when your husband starts leaving his playboys opened to the centerfold on the back of your toilet and your little kids can find them, well that's a problem. I told him I didn't care if he had the mag's, just have the good sense to hide them when he was done. He used to fall asleep on the living room floor and for years I would go out there like the loving wife I was and wake him up and drag him to bed so he would get a good night sleep and only years later did I find out he was watching his porn movies out there. I walked out one night and he was asleep and his movie was still going. I felt so foolish. I finally kicked him out when he started taping porn movies over our family vacation videos. That was the last straw. I'm so happy he's out of my house, but now when the divorce is final I will have no health insurance and no income unless I can get alimony. I may even lose my house. I try not to look at the negative things and put my trust in God and know that he will provide.

Thanks, I think you have convinced me I should start on the disability paperwork.

Karen

[MakinIT]

Don't get me wrong...I remember being 20 and finding out my husband looked at those magizines. It made me feel like I wasn't good enough, and that my husband wanted a woman like that. I felt like it was a vicious punch in the stomach.And yes, it has ruined families, depending on how the adults in charge are handling it. If the man is solely using it for sexual release, and/or the material is beyond the typical porn( that is, he is getting excited by child porn, or masochisitic or whatever wierd stuff is out there that I have never wandered into) that is a problem. If the sex life is healthly between partners and once in a while a guy looks at a magazine, well...whatever. My husband and I have a married best friend couple..very up and up. But Doug (the guy) likes to have what he calls "Hedos" every 6 months. Basically, 3 days of all his best buddies getting drunk, water skiing, camping, and looking at magazines together of women with big boobs. Apparently, guys do this alot. My husband found this stupid and has only gone twice. Doug doesn't understand why. (My husband isn't in to drinking to just get drunk and look at porn with other men...he thinks that's wierd, even though he knows alot guys do it) However, I DO understand he needs an outlet because I am so out of it or in pain. Our schedules haven't worked together lately, but we are going to work on it. like I said, if I find it, its gone. He just bought one magizine, hadn't looked at ( I could tell because it was so "new"..you know) and those aren't cheap. the last time I looked it was 10 bucks. It was tossed in the garbage because he didn't put it away right away. He just watched me throw it away. That's our condition and always has been. Besides. My 16 year has told him (innocently..not knowing her daddy looks at this smut) that she thinks its horrid and she's done research and found out even if we think they make the choice, often they are coerced into it,, and many of the girls are her age, just in a tough spot in their lives. (YOu gotta admit...my husband must be thinking, wow, I'm whacking off to potentially a child...EEEEEEWWWWWW...) They had that conversation a year ago (I overheard it) and have not found any material either on his computer (you can tell cause they send you such obnoxious emails and banners) or in hidy holes. Maybe that's alot of his problem. He has little sexual outlet.
I hope I'm not too blunt with you...this disease is so personal it brings out bluntness because of where the pain is. My husband and I used to have sex regularly. We had it the other night for the first time in a year. (go from 3-4 times a week to once a year...) He's miserable...Not because of sex but because he's tried to keep me up for so long he's with drawn into himself. I have to pull him out. I truly love him, but he just doesn't talk easily. he feels like its an attack.

Ugh..my upper pelvis is going bananas and dropping into my bladder. I feel like i have to pee but I am trying to ignore cause I just went. But I am hurting. It's that messed up of day, gotta take some pills.

take carel Happy paperwork hunting...oh..tip...while you wait for the stuff from ss to come, get HIPPA forms signed and get your records released to you so you can answer the stupid questions...besides, you have turn those in. Also get your pharmacy record.

[racegirl82006]

some offices charge fees for copies (which I understand) but if funds are limited like mine and just hard enough to feed kids and pay bills, then how can I ever afford to pay fees for all the many many Dr's I have seen? They didn't even have correct diagnosis for 6 years. How is that going to help? I just don't think these Dr's have unstanding how much pain I face daily. I don't know what else to do to get them understand and put it on paperwork etc. without hurting yourself? I mean my God, they ask u if u feel ok and tell u how they can see ur pain on ur face but not give u anything for pain or nerves. How can a poor person in pain afford Uro and Pain Dr's and etc? It took me 6 months to even get enough money $140 to my $400 visit which ran unexpected test. I got to go back next month, no way I can afford Pain Dr too! How in the world do u get expited ssa benefits? neighbor says her and her mom got it and money in hand within 6 months. long time ago but still. I have been turned down 2 times cuz wrong diagnosis. Sorry for rant just really fustrated now. I payed it in for 20 years plus without complaint from them, now that I need it and some people don't, I can't get it.......:headbang:

[icsonja]

Racergirl, I read your post and I feel your anger and your fear too. I know that feeling of having to choose between medication and electricity or food and seeing the DR, it is awful and when you have kids like we both do, there is no choice, amother takes care of her kids need and well, we hurt.
But here are a couple of things that might help, first do you have medicaid, if you have minor children it is much easier to get than if you dont have kids, I dont know what state you live in, but here in TX if you get a DR letter saying you cannot work due to illness they will provide insurance and foodstamps and if you are single and under a certain income they will provide TANF(temporary aid for needy familes)which is cash. If you need it go for it, that is why the programs are there for those who have the need.
Also most cities have programs to assist in medication or bills such as elecrricity during the heat of summer. Alot os states are using the phone number 211 which will direct you to getting any benifits you may be able to get.
As for SSI, I got mine, but was refused the first time (normal) and the second time I got it in only 2 months, but I was VERY prepared, with documents,RX records,everything I could think of I wrote on those forms, I even filled up the back side of them desrcibing in great detail what my life has become, what I can no longer do, every pain and how bad it is, I added copies of my voiding/pain diary etc. Also I got a Disability package from the ICA which helped alot. I am not sure if the ICN has the same type of personalized Disability package, but you can check. I think I paid about $40 for the package, but it was worth every dime. I sent all that in and the package tells you how to fill things out and,bam, I got accepted.
I hope this helps a little. Hang in there,
Sonja

[MakinIT]

Racergirl: I feel so for you and have said to myself so many times "what the hell do the majority of people do, who don't have long term disability and/ or a husband to help. I haven't wanted to get into politics because this just is not the spot for it, but current administration at federal levels does not favor disabilities or assistance for families. (I say this b/c I am also watching my sister, who is 43 and had brain cancer at 10years and is suffering Traumatic Brain Injury..her job has been cut, housing benis cut, food assistance cut, she only survives b/c she is still on my dad's Navy pension for health insurance..they used to do that for families with disabled kids.) My lawer was sure I would have gone through year ago....now? We are looking at Sept. He told me to get a journal and daily write " your activities, pain level, #times peeing, # times you have to get up at night. "
I have been through the first two levels but figured I would be seein' the judge.

See if you can get a lawyer to help you, one that specializes in this. they don't charge unless you win, then they tKE 2O-25% Of past winnings. You keep the rest. Plus earnings later.

In the mean time, take whatever help you can....for your kids.

I'm so sleepy. only 6 pm but I gotta go go tb bed.brr

gnite

[racegirl82006]

thank yall for ur advice. i just hate asking for anything. i am just too stubborned or independent i guess, but i got some help thank god. yes, a mother has to do what she has got to do. i just always paid it in, never had to use it but glad it is there. i know my kids come before my wants and needs. i will just have to keep dragging myself on til the calvary comes, lol. i just wish we had some more understanding people who make the laws that have enough sense to realize to take care of all the people that make this great country what it is, what it has been and will ever be. but that is just my opinion.

[ladygen]

Great post, my husband has ic and thank god we finally found a doctor who doesn't think its all in his head. I also have seen when he is crawling on the floor crying in pain. About 4 years ago he had already given up, he had written a sucide note to me. The pain was unbearable, we didn't know what was wrong the uro at the time was a idiot.

Then we found a pain specialist, well it was ok for awhile, he didn't like my husband, I don't think he believed him either; so he let us go. I was so stressed trying to find a dr for him. I didn't give up I was willing to take him anywhere in the state to find someone for him. Thank god we found one in our home town. He is doing fine, has gained weight, plays his guiter at home and writes music. If it wasn't for his meds I'd hate to think what would happen to him
Now I'm trying to get his Elmiron, because he has met the donut hole on his insurance:confused:

anyway always feels good vent I'll have to get my husband in here, he's just not computer friendly, I tell him he's not the only one out there

I admire all of you out there.:pray: May god bless

[Sheryle]

If you haven't tried Urelle, it's certainly worth a try. I have tried just about every medication out there. It was to the point that when my Urologist looked at my medication list, he would say, "Well, Sheryle, you're taking just about everything we offer for IC, I don't know what to tell you."

Well, by the grace of God, I made an appointment with my PCP and told him that I needed to find another Uro who had more working knowledge about this disease. Because we are on HMO it was a difficult search, but it paid off. The Uro I am going to now prescribed Urelle and it has helped alot. The spasms have diminished some and I am simply amazed that I don't have to go to the restroom every fifteen minutes anymore.

If you haven't tried it, it's time to do so. Call your physician!

[ellora]

I've emailed a few of you to find out exactly where your pain is. Thank you in advance for your replies. I decided to just post a public message instead of all those private messages.

Q: WHERE IS YOUR PAIN LOCATED?

Please help me out on this. My pain is located in my lower right pelvic area mostly. Sometimes I feel a twinge on my left side. And it is every day. The pain is worse if I sit for long times or stand/walk for long times. If I do something strenuous, it is really bad. Forget exercise and playing sports. I've had bladder infections before and they seem to be in the lower pelvic area in the middle near the girly parts. But this is on my right side near my hip bone.

I am interested to see if anyone else has the same type of pain that I'm having and in the same area of the body. Also, I've been diagnosed with Endometriosis and Ovarian Cysts. My gyn doctor is convinced that these pains are from IC. I'm going crazy!

PLEASE HELP.

THANK YOU IN ADVANCE.

[Sheryle]

I'm so very grateful to say I don't have debilitating pain every day. At one time (3 years ago) I did have constant pain for almost a year. There were nights I would get up and run the tub full of hot water just for a little relief. I would do that several times per night. Thank God I'm so much better. You can be better. Just keep trying meds until you get the right combination. I did have cortisone injections in the supra pubic area (under ultrasound) and I have had several rescue instillations of late, but by and far, I'm a whole lot better.

Attitude has so much to do with this disease. I don't mean to sound preachy:tsk: but we have to understand that the Lord said He wouldn't put more on us than we can bear. We can use the suffering as a platform to understand those who are worse off than we and to have compassion. I am taking 1800 mg of neurontin per day, urelle 4 times per day, hydroxyzine 50 mg at night, atenelol 50 mg 3 times per day for blood pressure and tachycardia and cytomel for hypothyroidism. I can't say for sure why it's started giving me so much relief, but don't despair. There is hope and there is relief. Perhaps I'm going into remission....

Prayerful blessings!

[Judy777]

Ellora, I have pain very similar to yours. My pain is mostly in my right side pelvis and sometimes I will get severe pain in my right hip. It feels like it is a deep pain in the bone. It will hurt so bad I will be in tears. Sometimes the pain in my hip will also feel like something is pulling and tearing. I also get a feeling like chards of glass are being rubbed inside in the right hip.

Do you have IC with Hunners ulcers? I do and sometimes I think it is my Hunners ulcers and the pain is being refered to my hip area.

I also have Endometriosis and have had ovarian cysts.

I don't have a problem with sitting for long periods, but any physical things like walking for a long period of time, cleaning the house like a "mad woman" will make me start hurting if I'm not already. Bending over just kills me it causes me instant pain and also lifting anything heavy.

Take care,

Judy

[MakinIT]

Wow...haven't written to this thread in a long time

Besides the usual suspect (pubic bone tenderness, torture as my bladder fills) I have an odd pain on my left side inside the hip (ilium?)...I think it is scar tissue where my doc nicked my bowel during one of my numerous pelvic surguries and I am prolific scar tissue producer. I have no female organs left to speak of except what's on the outside...I have a long strand of scar tissue from my navel to my, well, clitoral muscles so having an O is not much fun...kinda feels like I've been kicked in the stomach right at the peak of what should be fun...my husband has been rudely tossed off more than once. New pain that sounds something like is being described. My SI joint (Sacro Iliac) on my left side is so tender I can't hit the clutch in my truck . Sucks. I went in for an injection last week. Really helped....but I over did it yesterday, however I am springing back quickly. But, Now it show my right side also hurts I just didn't notice it. I'll let it go for now. ( The injection, even sedated, wasn't fun)

I see a chiro regularly. He works all the kinks in my body out, usually before I see him I visit his massage therapist so it's kinda of my twice a month treat to myself for all the pain. My insurance covers most of it (10 dollar copay for 150 visit) so I feel better after and I am getting stronger in my "core". (I have gotten very weak in my tummy muscles..If I can strenghthen that, I will be in good shape.)

Hope that helps:smile tee

[ads]

Sheryle,

First, I am so glad you are getting some relief from your current meds! Sometimes it takes just the right soup to manage pain and mixing the meds makes for the best outcome and overall taking the least amount of meds.

The first paragraph of your post is the way I lived for about 3 years. You described it so well! It reminds that although, I can't work anymore and the meds make me extremely tired and turn my brain to mush, taking them is better than being between the bed and the bathroom. Thank you for your wonderful writing!

Again, I am so happy for you!

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I'm so very grateful to say I don't have debilitating pain every day. At one time (3 years ago) I did have constant pain for almost a year. There were nights I would get up and run the tub full of hot water just for a little relief. I would do that several times per night. Thank God I'm so much better. You can be better. Just keep trying meds until you get the right combination. I did have cortisone injections in the supra pubic area (under ultrasound) and I have had several rescue instillations of late, but by and far, I'm a whole lot better....Prayerful blessings!

[ads]

ellora,
I wonder if a PT that specializes in pelvic pain could help determine what is causing you pain, sometimes they can assist doctors with diagnosis. There is a list on this board and I would ask those who live near your area. I am sorry my pain is different, so can't help you.
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I've emailed a few of you to find out exactly where your pain is. Thank you in advance for your replies. I decided to just post a public message instead of all those private messages.

Q: WHERE IS YOUR PAIN LOCATED?

Please help me out on this. My pain is located in my lower right pelvic area mostly. Sometimes I feel a twinge on my left side. And it is every day. The pain is worse if I sit for long times or stand/walk for long times. If I do something strenuous, it is really bad. Forget exercise and playing sports. I've had bladder infections before and they seem to be in the lower pelvic area in the middle near the girly parts. But this is on my right side near my hip bone.

I am interested to see if anyone else has the same type of pain that I'm having and in the same area of the body. Also, I've been diagnosed with Endometriosis and Ovarian Cysts. My gyn doctor is convinced that these pains are from IC. I'm going crazy!

PLEASE HELP.

THANK YOU IN ADVANCE.

[ads]

Wendyk,
I felt like it would be giving in to file for disability too, but is isn't and you can always turn it down if you get well. It does take a long long time just to complete the paper work and get your records together, then you have to wait for the gov't to process and decide. If you change your mind, then you can always walk away, but if you don't apply you may be left in a bad position. I waited until the very last minute and was in denial, so I was lucky to have things work out and be approved quickly, which is rare. (30% or so on the first time with SSDI)

I wish you the best and can understand your position.

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Dear Freckles,
It Was So Sweet Of You To Reply To My Post When You Have So Much Going On With You. Have You Thought About Filing For Disability. It Would Help You Out Money Wise, But You Might Also Be Eligible For Medicaide. Or Maybe You Can Get Your Husband To Continue Your Insurance, As Part Of Your Settlement. My Family Has Suggested That I Should File For Disability, But I'm Not Ready To. In Order To File I Would Have To Admit That Ic Has Won, And I'm Not Ready To Do That. My Family Is Getting Tired Of My Being Sick, And I Feel Guilty Because I Can't Do Everything With Them. So Than I Force Myself To Do Whatever The Family Is Doing, And Than I End Up Over Doing It, Which Than Makes Me Flare. It Is A Terrible Catch 22. This Disease Is So Hard To Explain To Your Kids,and Family Members. I Hope That Things Start Getting Better For You, :grouphug: My Heart Goes Out To You. Keep In Touch And Let Me Know How You're Doing.

WENDY

[MakinIT]

Wow...and just in reply to Wendy's quote as well....Disability TAKES FOREVER. I finally have my hearing next month after 3 1/2 years. You've worked hard, I assume, that's what it is there for, and I completely understand the IC winning part. I've had so many tearful arguements with my husband RE: this...and we all know (including docs)I ain't teachin' anytime soon. It really is a pain, but you have to move through the steps of denial, anger, bargaining, depression, and acceptance...much like a person with a terminal disease...only, we aren't terminal so we move up and down the ladder. (Anger seems to be my favorite, followed by severe guilt and depression..)

As for pain in the rump (some stated) I would imagine endometriosis or adhesions. If it was me, likely adhesions, but I've had many surgeries. If you haven't, I'd worry about endo. not fun at t'all.

[KissingKT]

I fought the IC/FMS for several years and finally gave in and allowed my family to file for Disability. I won after a year and a half.. be prepared to be humiliated by the SS hearing. I had very little self esteem before and none after the hearing. My pain is constant and I am unable to walk without a cane anymore. I can not sleep (even drugged) more than three hours at a time. I have interstims, do bladder instillations, and see a pain specialist. My life is very limited and I am incredibly depressed. My pain specialist suggested that I seek the help of a Mayo Clinic or someone who sees thousands of ICers a year.. Does anyone have any info on whom helps the most? I just want some life back. I want to play with my babies and make love to my husband. I want to be able to walk down my hallway...

[MakinIT]

Wow, I had heard they were pretty kind. I have a lawyer though, mayber that makes a difference. My lawyer says the hearing officer in my case is nice, he just wants to see people who say they can't work when it comes to a disease that 90% of the patients can work. And they will also look at the fact that my job was very physical, but required a Master's degree and high pay...They take all that into account as does my private insurance. My case file is almost a foot thick, just from my primary there are over 250 pages + a cover letter that states, emphatically that I should not be working because of X, Y, Z...and he refers the reader to specific points. My pain doc tried to put an interstim in a couple years ago and the report said I had so much pain in my pelvis the machine couldn't cover the area, it just created more pain. Finally, I am also taking my friend/former boss/mentor/now supervises my volunteering to the hearing. She's known me since I was 14. I am now 41. So she is pretty well qualified to speak to the change in my life.

My big concern, should I get this, is the impact on my children's monies. (is that even a word:confused: ) I currently have private Long term dis. insur. and they have stated all along any money that comes dues to my illness is taken from my LTD private money. So, social security has said I'm eligible for about 1300-1400, I think and my kids around 250 each. Their money goes into an account in their own name. (As people who have had SS know) ..So, all my back pay goes to the standard and my lawyers. It goes into my account...AND..goes out. Sorta sucks but I understand. This company, though, never gave me extra money for my kids. I got the same amount of money as a no child employee or a 5 child employee. So, I'm supposed to sign some form saying the money goes to the children, and I have to account for it. When it goes into their accounts, I have to pay 25% to lawyers and, according to private account rules, the rest to them...which violates social security law. Then they reduce my monthly allotment by my SS amount and my Children's and pay me the difference...(about 700 dollars) So, all the money is in 3 separate accounts..and I can't take money from my kids unless it is for their needs..basically a 500 dollar pay cut for the family income, although I understand some money can come out for school clothes, fees, food, supplies...but it seems harsh. It's not like I don't want my kids to have money..I just think I feel penalized and confused re: how to reconcile trustee pledge and sending their back pay to my company.

What to do, what to do. Talk about being caught between a rock and ahard place.

[KissingKT]

I had an attorney also. I also had the full support of my Urologist, Pain Specialist, and Pain Psychologist. It was still a painful process because it felt like I was giving up. I love to work--I owned a Pre-School. Since I was a small business owner I didn't have diability insurance and the other bells and whistles. For some unknown reason--I at last qualified for SS benefits (a whopping $300 per month) and my two children do not. After attorney fees, medical fees, and living on prayers I am now $16,000 in debt. We took a $2,000 monthly cut in income and it's been hard to adjust. Fortunetly, my husband is very supportive and we continue to seek answers that may give me some life back. The world of Social Security is confusing and stifling. There are so many people applying that are just to lazy to work that it has really muddied the water for those of us that truly need the help. I wish that there was legislation to protect us. It would be grand if--once you passed the hearing process-- you were guaranteed a life that was financially beneficial to your children. I don't mind doing without material things--I just get tired of reminding my kids that we don't have the money for lessons and things right now.

Good luck with your attorney. I will pray that they really do come through with what they've stated you'll receive. It's hard when it doesn't happen the way you thought it would. :)

[marsi4]

Hello,

I don't mean to be rude but you guys are posting under the wrong thread. You should be posting under the tite Social Security and not under Pain Management.

Marsi4

[MakinIT]

:) Marsi, my apologies for going off the subject, as you can see a couple of us got sidetracked by SS issues along with pain (as we all know Social Security is a Pain) So...we shall keep it confined to pain. My pain is spread all over my pelvis, back to my rear, up to pubic area and on my pelvis floor. Sometimes my pain goes through my entire intestinal system...Ok..stay on subject well enuf?:) :)

[ads]

I was in constant pain and urgency for 3 1/2 years without a break, yes the right med combo finally helped, which is great, but IC still disables me. My attitude was extremely positive and depression didn't get in the way at all, but those things didn't decrease the pain one little bit because in the end it was the meds and quiting work to take the strain off my body that brought about the change to make things half way bearable.

If attitude could cure even 30% of severe IC we would all be in Attitude Conferences. I know God is with me, but He didn't "put" IC on me because it is an evil wicked destructive disease. It is time to keep religion in the appropriate section -- please everyone! There is a section provided on this board for those purposes.

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I'm so very grateful to say I don't have debilitating pain every day. At one time (3 years ago) I did have constant pain for almost a year. ...

...Attitude has so much to do with this disease. I don't mean to sound preachy:tsk: but we have to understand that the Lord said He wouldn't put more on us than we can bear. We can use the suffering as a platform to understand those who are worse off than we and to have compassion...

Prayerful blessings!

[KissingKT]

I'm sorry for getting off subject. I'm new to the chats and have had a little trouble figuring out how/where to post. My pain is daily. I have several things "wrong with me", so my pain may be different. It aches in my abdomen like I've been pummeled by a very big person. My stomach is nauseated and has muscle fatigue. My right leg has a constant "charley horse" feel from my toes to my flank.. I have nerve damage from an Interstim unit being broken in an accident. It had to be removed--but the left one still works :)

My pain specialist has me doing Bio-feedback and six 10/325 Norco and two Dilated a day.

[MakinIT]

KissingKT...it's really ok...we do try to keep subjects separated but just by the nature of the disease, it does overlap. And religion is such a part of peoples life I think that folks truly do attribute that to any healing, if so, that helps in their pain relief. But yeah, some of us :rolleyes: are bigger talkers than others....(hey, my life has become dull:cat: ) I tell you what...I got one sore pelvic floor this week. Yeeouch. Have had to take extra Oxycodone...

Take care....

[racegirl82006]

I seem to have low achy back pain that comes and goes, usually intensifies before bad flare.

I have pain EVERY DAY. The pain that is debilitating it in my bladder region and seems to radiate all the way through my urethrea. I also feel LOTS of pain surrounding vagina, and urethrea (ie the walls or muscle I guess) If I wipe too hard or even be touched in surrounding area, when hurting bad, it makes it worse. Of course walking seems to "shake it all and hurt it too) Bladder feels like stabbing, back ache dull, urerethrea it burns or just peeing razor blades.

Everyday, sometimes before or after pain, I try to urinate and in some point of stream it is like an open wound with salt. U know. Tense me up and it momentarily stops til I relaxe and "push it on out" This only makes pain come back some time afterwards varying.

Best I quess I can describe, it has taken me 6 years to get dx so maybe I haven't done good job describing. Nothing helps believe me, not yet I have been given anything strong enough. I eat tynelol pm like candy 100 of em "might" last me week. At this point in the pain, I don't care about long term effects. I just want some relief really don't know how much longer I can keep living in pain. I can't hide it in my face anymore. It has gotten worse because no treatment until now.

I do know that If I were paralyzed waist (above bladder) down, I wouldn't feel any different. Thank God I go to Dr tommorrow to set up cysto/hydro (suppossed to be with sedation). I don't care anymore, just stop it please, do what u have to do. Don't get me wrong, I love sex (hadn't had it in alomost 3 years though, no lie) I would forever give it up to be able to be a "somewhat normal" mommy to my kids. Well enough for now.

Angie

[Freckles]

I really don't think we should be pointing out to each other if we are on the wrong posts or not. It doesn't bother me at all if someone gets off subject for a while, if it is something they want to say. I guess I'm very open minded and don't let that sillyness bother me the way it does some people. Yes, I know these posts are for certain subjects, problems, etc., but come on we are all here for support, please stop pointing these things out to people. You're being ridiculous. If you are not religious that's fine, deal with it. I'm not buddhist, or anything else but if someone makes a comment about it I certainly don't want to beat them up about it. Lets be nice.
Karen

[MakinIT]

Racergirl;I'm sorry about what's happening. Have you tried at all ice packs between your legs for short term relief and asking your doc for a referral to special PT who does Pelvic Floor Therapy? It basically is a more intense Kegal work out. It helps and it sounds like it would help you.

[Freckles]

Does anyone feel like they are carrying a basketball in their belly? I have pain everyday as well mostly severe burning and what feels like pain in my urethra. I also have this horrible pressure like I have a basketball sitting on my bladder. It's horrible. I do get a lot of relief from the pressure when I lay down, but who can spend their life in bed. I would be happy to do so if I weren't alone and didn't have a bum bladder. ;-)

[MakinIT]

Yeah...I have that feeling....course, it could be the cheesecake and vanilla icecream I, oh so love. Seriously though...I know what you are talking about, I think. Sometimes I have that sensation when my bowel is, well, backed up with no place to go (so, more of a Softball) When I finally can go, I lose that sensation but walking around with it, I feel very bloated and uncomfortable. (Not the "rush to bathroom cause I gotta go poopy" sensation but just, Ugh...like the commercial that shows the turtle plodding along...trying to make an analogy to constipation.)It puts alot of pressure on my pelvic floor and my bladder.

Ah...a place to discuss my poop. what fun and I don't even know what you all look like. Probl. better that way...ha, ha, ha :rolleyes:

Tracey

[Claredale]

That hoarding the pain meds is a big deal for me too. I take Loratab 10, B&O Supp and Val Supp, Soma, Lunesta. There are times that some of the meds just don't work and there are am. One time my doctor put me on Loratab 7.5 (30) for 2 weeks. Has anybody tried to break one into a third??? I actually was calling and crying on the phone to my URO's office. I have an appt tomorrow, so I guess I am going to finally go on the longer acting drugs. I don't know why I am scared of them except for one time a doctor gave me Morphine for 1 time a day. Buy 2 or 3 the next day I was way up on the pain scale. I am so glad to learn on these boards that I am not the only one that hoards the pills. Sometimes when I am just hurting a little, I think just wait a little longer. When I hear the pharmacy clerk say that it wont be ready for a few days, I just sit there and cry. My husband does realize my pain, but can't figure out why I run out. It's because the doctor doesn't give me enough for my pain...

[MakinIT]

Oh...I so love going to the pharmacy with my MORPHINE ER script that I take 120mgs BID and them saying "Gee, I'm sorry, we are out and we won't get anymore until Monday" and it's Friday. I Stare for a very long time and I'm sure make the clerk a wee bit uncomformtable and say "start calling some other branches...Do you understand I have been on this medication for 3 1/2 YEARS and will be violently ill if you don't get them for me?" They can't get to the phone fast enough. I'm a gentle and kind, quiet person by nature but when something A) occurs with my kids or B) My IC treatment I get nasty. I've actually gone in in the middle of a withdrawal episode. I can't remember why I was out, but they know me and I got a 2 days emergency supply just by how Iooked.

Tracey

[sleepyangel30]

I know exatacly how you guys feel... Ive been there and done that... The terrible pains I had every day sunddenly vanished. The chronic yeast and uti's also vanished.. I praise god every day. Don't give up stay strong fight this diesase like a warrior there is hope....

[Claredale]

I live by those 2 rules as well Tracey. I go back to the doctor today. I guess I will finally start taking the stronger pain med as long as I have some breakthrough pain as well! I know the directions say take every 4 to 6 hours. But the Loratab doesn't last even for the 4 hours, so how am I supposedto make 60 pills last for a month.

[racegirl82006]

makinit, yeah i have tried everything. last couple of months i have seemed to go down hill fast with constant flares, and just complete horrible pain and worn out feeling. it seem irratracable at times. last few days, i am having to strain. i feel like i just want to lay down and give up. that dr better give me something after he "see's what's going on" next wed. it won't be a pretty site. i can't take this stupid pain anymore. painic attacks have been awful, zanax helps but meds need to be increased, .5 aint cutting it.

[MakinIT]

Race; Keep a detailed log to show your doc and make him/her LOOK. daily (go back if you have to and kinda fudge but not make it worse than it is) document pain levels on a scale of 1-10...I do this daily/nightly..you need to do it more. Do the same with your emotions. And the same with the effort to urinate. I don't have probs with that except after my bladder installations (then I get the joy of cathing myself..got to do that yesterday...) I'm not sure how close you are to a big city in Mississippi (so nice to have that little rhyme from childhood to remember spelling that state...ha, ha) or if you are closer to La, Ga, ..I should know the geography better, I was born and raised in S.C....but you need the help of someone who treats SEVERE IC. Not just provide irritation relief for those with milder cases (not dissing milder cases, but the severe ones are incapacitating...I haven't taught in 4 years and it kills me..)

Gotta go pick my youngest up...She's with in my allowable driving distance..1/2 mile. (there are some things you give up with the pain relief)

Please, Make a journal.These linear doctor types respond to written documentation. If you can buy a measuring cup and measure how much each void is, that will help as well. ( if you have to get up 18 times in 24 hours to pee 30 cc's, there is a definate prob.....that did it for me.)

Good luck.

[racegirl82006]

thanks makinit. i have been keeping a daily journal. my life of pain, lol. he didn't even look at the other day when scheduling the surgery. he is supposed to be IC "specialist". on my bill dx listed chronic ic. he should get off his horse and give me something soon. he seems like a good dr, i don't being told everything though, ie urinalysis etc. i guess he is waiting on stupid cysto to give me anything. i have done everything but put a gun to his head. (my next option, lol jk) i have asked him nicely to help me control my pain etc. told him i had been taking high does of tynelol pm just to help ease pain. if he don't put me regular pain meds after cysto, i am finding new one.

as far as big city, no not really. i live in ne corner of ms. i am driving about 2 hours now with frequent stops, and diapers, lol. this one located in a college town (MSU). i don't care how far i have to be driven or drive if i have to get relief. i am sick of hurting. this is crazy.

just makes me sick to my stomach sometimes, when people u know aren't in pain, just trying to get "high" are on meds, but u know urself there is something wrong with urself and u have to suffer.

i researched laws here and they are awful. it tells about cancer patience should be treated with proper pain relief, and acut pain, also. but chronic pain, be "leary" of. same old bull addiction etc. ***???? i mean my god how hard is the st. boards for dr's these days? shouldn't they know that chronic pain awful too. anyway enough of my rant i guess, gotta go try to fix my kids bowl of soup, all i feel like fixing. thanks for ur help again. i will detail my journal more. see if that works.

i ain't asking to be healed, just some relief in order to function. my kids have missed out on me doing stuff with them, cuz pain for sooo long...

[MakinIT]

WOW: not treat chronic pain with narco pain meds? That's like having a Cancer patient in severe pain for many years without relief. That's horrible. Thank god I live in a state where, yes, there are docs who are horse's asses, but most are good and want to see you come in some other color than grey, eyes: clear, not glazed and missing the tell tale black circles. But I wil admit, even on the high doses I have I still have horrid days, so not all is peaches and cream, and getting out of bed is a ***** (and staying out). so I wouldn't oversleep this morning, I made myself mop the kitchen floor, wash the dishes (DW broke...fixed for 170 bucks....10 mins to put in a plastic part..***???) and washed the cabinents (oh and made coffee) all before 7 am. It was the end of one pain med cycle and I was gonna have to take my next dose soon...I also had to be alert for getting my kids to school. Oldest had Late start. She's 16 and fears the school bus. wanted me to drive her at 10 AM. I always take my youngest at 8:30. Then had to pick up youngest at noon (early release...cut into my damn nap). My husband goes to Scotland for a conference next week. Fun eh? (yes, I'm bitter) but my oldest keeps dropping hints that she wants me to take her to school...AT 6:45AM...SO SORRY...she refused to get a license for fear of having to possibly run errands b/c I'm not really legal drive...So she sorta screwed herself. Dad even offered to help her get a car. Nope. Didn't want to have go get milk, or take kelsey somewhere. She doesn't even care that it would make her dad's live so much better. Anyway, off topic .

Check your Private message.

Tracey

[Claredale]

Race, I know what you mean about eating Tylenol like M&Ms. My son goes to MSU and I understand about there not being much in the way of medical help. Do you go to Columbus? My IC started when my kids were small and I know how tough it is to try to be a normal mom.

I think that you are describing your pains so well. I can relate to the pain while trying to pee. The fear of the pain causes the pausing. There are times that it reminds me of labor. You are pushing and straining to get out what you can and then you take a breath and push again. After I am finished I sometimes have this huge spasm and I just scream out.

This week has been a good week for me. My pain had been just like you were describing. My doctor has put me on B&O supp, Valium supp and Loratab. What helps me with my urethea especially after the spasms after going to the bathroom is lidocaine gel Jets. It is a syringe and you put it right into your urethea and it numbs the pain for about 15 minutes. I have also bought some of that liquid stuff from that numbs pain for a short time. They market it for kids that have scrapes and cuts. You can get it at Walmart and apply that to your area. I think it is made by Band-Aid I think.

Hugs, Tracey

[racegirl82006]

Race, I know what you mean about eating Tylenol like M&Ms. My son goes to MSU and I understand about there not being much in the way of medical help. Do you go to Columbus? My IC started when my kids were small and I know how tough it is to try to be a normal mom.

I think that you are describing your pains so well. I can relate to the pain while trying to pee. The fear of the pain causes the pausing. There are times that it reminds me of labor. You are pushing and straining to get out what you can and then you take a breath and push again. After I am finished I sometimes have this huge spasm and I just scream out.

This week has been a good week for me. My pain had been just like you were describing. My doctor has put me on B&O supp, Valium supp and Loratab. What helps me with my urethea especially after the spasms after going to the bathroom is lidocaine gel Jets. It is a syringe and you put it right into your urethea and it numbs the pain for about 15 minutes. I have also bought some of that liquid stuff from that numbs pain for a short time. They market it for kids that have scrapes and cuts. You can get it at Walmart and apply that to your area. I think it is made by Band-Aid I think.

Hugs, Tracey


cool thanks i will try that. no, i go to starkville, even though i live in NE corner. i think "maybe" he knows what he is doing, just being precise i guess, but needs to hurry. days for me seems like weeks. wow, i can just imagine how it was back then. thanks.

[Freckles]

Makin it....
I think you and I may have the same daughter. :-)
Karen

[MakinIT]

Freckles: Ha...I'm assuming you mean lazy? (if I point this little personality flaw to her I get the tirad of "I'm in honors classes, the school musical,...um, homework.."...Like, ok, I tell her I completely understand difficult classes, I had half my bachelors when I graduated HS, so I sympathize. Before I can even finish she gets Very, shall we say, protestesth too much..."You think I should have a job..(yes, she has her hand out all the time...I'm on disability, husband teaches..our income is better than most, but it has been cut drastically) She is Lazy. She likes to tell me school is harder now than it was in "my time" (mid eightlies) I just cough, smirk (which really makes her mad and, truly bad, makes me even more smug feeling b/c I know she knows I'm right.) She's a good kid with a good heart. She just heard from her dad all her life that we would take care of all college stuff, but he never qualified that with "but you need to try for scholarships, advanced coursework that can give you college credit...free, and that she needs to work during breaks. Her idea is that she is only young once and she needs to make the most of it so she shouldn't have to work. AAAAARRRRGGGGHHHHH.....her dad is working w/ her. He realizes this is his fault.

Have a good day.

[Freckles]

Yes, I mean lazy. My daughter just recently moved out and is living with her Dad and I miss her desparately but I don't miss her laziness. She will be 19 in a couple of months and just recently started working. She didn't like the fact that I set limits on when her boyfriend could be at our house so she decided to go to Dads where she can get anything she wants. I'm sorry but I don't want her boyfriend over at the house 24/7. I was sick of him. I miss her but I don't miss the arguments at all. We did argue because ....well....she just thought the world owed her and I tried to teach her that it didn't and she needed to get off her pedestal or she was going to have it rough. We spent the whole day together together and had a great time. I may even go to the movies with them tonight since my bladder keeps me from having any kind of a social life. :-(

[Freckles]

boy my typing stinks when I'm going fast.....
thats we spent the day together today...
hee hee

[MakinIT]

I was reading so fast I didn't notice...besides my writing gets goofy. Boys aren't a problem with my daughter. She's very moralistic and gets her nose in the air about friends who are doing things we parents don't want our kids doing. Then she wonders why they are ******. I told her the other day her place as a friend is to listen and offer support if needed, and let them know that isn't for you...but end it there. They don't want to feel like they have anothe parent. Same thing for drinking or drugs. She has called our house bawling because someone had beers or pot. I tell her that was good to call, never get in the car with someone altered...but she has to stop crying. But, she has hard time with me having to sometimes have to do something that is legal in our state when I have a very few moments when nothing works. (I have the docs ok, but I rarely use, she understands, but worries I'll die of lung cancer...)

Anyway....My younger daughter...it is IMPOSSIBLE find your way around her room. holy smokes.

I had a wierd experience today. I went to my chiropractic appt. He is a very sweet man, has IC himself, and is constantly looking for natural ways to alleviate the pain. (He pees 3 times during my time...he is relieved when I come in..he can be himself.) He was trying to help me with Yoga combined with his chiro in my pelvic cavity. He lifted up my left hip (it was very sore...he says his are like that too...he suspects we draw ourselves in) and worked on pushing up y leg like a PT would EXCEPT he drew his hand in a counter clockwise fashion on my bladder. I thought I'd die. I went into pelvic spasms and bawled. Amazing how quickly he unwound the spasm though, he went the other way, brought my leg up again, pain gone, and hip pain disappear. Totally cool. He finds neat stuff, and we actually help each other. He shows me what to do and I help him ( I never get near his groin, but I trust him with how he works with me) Anyway...we do all kinds of interesting things.

Good night...I tired.

[DaniBelle]

Why do doctors not understand how painful this is? I haven't been able to go anywhere more than 40 minutes away from home and I'm still suffering. I try 'to get my mind off it', but my bladder and my back keep reminding me. Those with IC aren't the only ones who suffer from this disease, their families suffer as well. My boys don't really understand and my husband gets more distant day after day. He doesn't ask me how I am feeling, what the treatments are like (he has no idea), if I'm in pain,etc.. I (we) went through 4years of surgeries due to gynecological problems. I ended having 4 surgeries. I don't think he ever believed I was really sick until the last surgery when a specialist found that my prior GYN had left remnants of both ovaries (which had 3 huge cysts on them) and adhesions of the bladder and endo. He was so mad at my prior GYN, he was ready to sue, but unfortunately, in my state, you can forget it unless a doc has cut off the wrong limb. I am going to ask forgiveness for talking about my spouse after I log off because the bitterness only makes things worse. My prior GYN (after 3 surgeries) said I couldn't be having gynecological pain because "there is nothing left in there...the pain must be coming from somewhere else". He sent me to a pain clinic. I only went for 3 months until having the surgery by the specialist. After that, I had about 6 good months until the IC acted up again. Today, I went for my 5th instill in 1 week. It was like being stabbed with a small knife. I haven't had a good night's sleep in a long time (nightmares about my bladder exploding like a volcano). After returning from the instill, I called my doc and told her to get me in ASAP to the pain clinic. I had been crying before (and after) the treatment, so all the staff were staring at me..like they've never seen anyone in pain before! I had a diary to give the nurse to let her see when the pain is worse, etc., but she didn't even take it. If they don't get me into the pain clinic tomorrow, I'm going to the ER (my hubby is just going to love that!). I've had abdominal pain all of my life and don't think I can take it anymore. I'm taking Lortab 7.5, 1 and 1/2 every 2 to 3 hours and it only takes the 'edge' off. It's funny that I watch T.V. and wish I could just clean my house. What a wish. I'm getting more depressed each day and my mom calls everyday. I don't want to talk to her because she is taking caring of my Dad (ill) and my 97 year old grandmother. She has too much 'on her plate' as it is. I'm sorry I've rambled on again with such a long post, but if it weren't for all of you, I wouldn't have anyone to talk to! I wish you all would get healed of this terrible disease soon. Please....some doctor come up with a cure so we can go on with happy lives!

Hang in there everybody!!

Dani

[MakinIT]

Wow..I feel like I've been smacked with a waffle iron in the face (prob look it too ) and my Belly hurts so bad ....I've got the FLU. I can never take the shot b/c of a prior illness that makes it ill advised to get them. After 10 years of teaching this is the first year I've gotten it. So yesterday, I was very grumpy b/c my husband was an Ass. Going to Scotland/London on Wednes.He promise d my 11 year old he would get the garage set up for a big party on Halloween. I was extremely leary, having a party by my self...but he said no worries he'd take care of it. I went out to just him help. It was a mess. But he tends to throw his stuff and whereever it lands, there it is.We ran out of room in the garage a long time ago, it is now in his office in boxes, our bedroom in various storage states. So he started pitching a fit yesterday saying nobody cared about his stuff, all his stuff was ruined, flinging stuff in anger...couldn't deal so I went inside. I was very sensitive, started crying, was beating myself up in my room..the ol' why is he so angry with me? Why won't he hug me or come to bed with me? I was really worked up? THEN the cramps began...now, I am usually "backed up"...but I can take care of it. In 1-2 hours I went 8 times (le' poo) Then the diarrhea/vomoting began.My tummy still feels it and I have a fever of 101. Yuck. Life is really no fun right now. Has anyone noticed vimitting/barfing hurting\irritating you?

gotta go that took me over an over to type.

[Claredale]

I know that this should go under the family thread, but I was talking to my mom yesterday. She is a retired nurse and has always seemed to understand me and my life with IC. She has been to the doctor with me and my post op after my interstim. My doctor assurred her that I had chronic pain and would require pain meds most of my life and that I wasn't a "druggie". There will hopefully be times of remission, but there was not a cure of IC. I am in the moderate to severe stage and deal with alot of the pain and still work full time and try to function normally, but by the weekend, I am zapped and just want to sit with my heating pad and stay at home. I don't sleep at night no matter why sleep meds I take. It is an effort to get 2 full hours of sleep in a row.

For some reason my mother has decided that I should be healed some how. She is driving me crazy since I am in pain 24/7 and I used to not be. I try to explain the flare thing, etc... She said that she thinks I should just have my bladder removed. This is messing up my life ( I have had IC for 15 years at least) and now she said that my husband is going to get tired of my illness, so we need to do something...He has stood by me so far, don't know why it . All the meds I am on is going to age me mess up my body...I am not kidding here. I am 41 years old. I hear constantly that I could pass for in my 20s. When I said that...she said well just think how young you could look if you weren't on the meds...LOL!!!! I guess I should look like I am in high school. My mom can be dingy, so my husband just told me to mark it up as a dingy moment and it will totally blow over in a few days. When she told me that my step sister has TMJ and is very unhealthy, etc.. Now she is off her pain meds (after 2 jaw surgeries, I must add), she can't believe that I am still relying on my pain meds and I guess she is thinking that here my feeble step sister that can't deal with anything is off her meds and her daughter is still "Hooked". I let her know that my MIL has put me through this H*** for quite a while and have educated and checked into all the information that I can get my hands on regarding IC. I told her about this site and the read about the same type emotions and pains that I have had myself and how helpful this site has been...Now some of you have heard this from my in my private messages, but my mom asked how I know that I am talking to people that actually have IC. (I guess you all could be predators leading me astray).

Sorry for the long post, I just needed to vent for a while. My mom has been so supportive of me for so long. I know that she doesn't understand some of the stuff like the Heparin instills, etc. But I know that I have researched and that she could if she wanted. She doesn't get on the internet...

The other thing that has come up is that she doesn't think that I should take baths anymore. I told her that my doctor said that baths were fine and what I have read here and other sources that baths were fine. Just not use oils, perfumes, etc...My mom just said "well those people still have IC don't they" Steamed me good!!!!

Like I said, the next time I talk to her, it will be a totally different deal. I promise she can be like a goose and wake up in a new world everyday. I dearly love her and I know she is worried about me, but we all deal with enough just having IC. Why do we constantly have to explain it.

Thanks for the venting session!!!

I feel better!!!

[Freckles]

I feel so lucky to have found such wonderful women that are going through exactly what I am going through. My Father still does not understand how sick I am. He gets angry when he calls and I don't pick up the phone. He doesn't understand that when I'm in a lot of pain I just don't feel like chit chatting with anyone. He will start calling at 8:00 in the morning and just keep calling, leaving messages and filling my answering machine so no one else can call. I want to pick up the phone sometimes and yell "stop calling me". He's old and I don't want to hurt his feelings, but how many times does he have to be told to leave one message not 20. I've told him so many times that if I don't pick up I'm either not home or sick so leave 1 message and when I'm able I will call him back. He still calls and calls. Then like some of you guys he always mentions my pain meds. He doesn't understand that without them I would jump off the nearest bridge or ram my car into a brick wall. I try to be understanding because if you haven't lived with this pain there really is no way to understand it but sometimes I just get so ******. Instead of loving me and being supportive he points out about the addiction factor of taking pain meds. Again, I explain that if I get addicted, I get addicted. I have no choice, other than to die. I would not want to live my life in the pain without the medicine.

Luckily I don't have a husband to deal with. I will probably never have a long term relationship because it takes a special man to deal with all of this and to be honest I have yet in my 47 years to find a special man. I don't think they exist.

I was packing a few days ago to go on a trip ( didn't go ). It took the longest to pack my medication. What a hoot. ;-)

I'm just trying my best not to be negative about everything, but it's so hard. These people who don't understand have no idea what it's like to always know where your bladder is and the fact that it burns and hurts and it hurts to sit and walk. How I wish I could go back to those days.

Karen

[Claredale]

I didn't call my mom yesterday. I usually always call her on my way home from work. Instead I called my sister-in-law who has chronic migraines. It was good to be able to talk to someone that understands about chronic pain and the fear of not having the meds and how both define and control our lives. She is about to go out of town to check on her elderly mom and her sister that has MS. She is like us in that she is afraid of having a migraine. Her's last for days and not being able to help her family that absolutely need her right now. I told her about this site and how much it helps to read about people just like me that have the same wishes and fears. And especially that you are all understanding and helpful. I don't know if there is a site like this for people with migraines.

Tracey

[Freckles]

I do think there should be a site dedicated to chronic pain patients, whatever the cause. I'm not sure if there is one or not, but if not someone needs to start one because all of us need a place to vent and talk with people who are going through the same thing. I went to lunch with someone the other day and found myself looking at all the people who were on their lunch break from work and I was getting angry. I had to really snap out of it. I was angry because I was so jealous that I couldn't work anymore and I miss working so much. I miss being around people all day. I miss the lunches out. I need to work on my anger issues for sure.

Karen

[DaniBelle]

I know the feeling. When I watch commercials on T.V., I long to be able to even clean my kitchen with the products they are advertising. I never thought I would wish to do that. My son (my big supporter - the hugger) wants an Atlanta Falcons Jersey and has been requesting one for a couple of weeks now. I can't go to the mall, so I'm going to order it for him online today. I have been an avid gardener for about 15 years now, but I could care less if all my tropical rare plants freeze outside tonight. That is not me at all. When I was well, I used to go around for hours, pruning and making my plants and flowers look their best. That is in the past. I don't care. I never thought I would say that. My back is hurting and I can't figure out what I can eat. They give you a list of things 'not to eat', but I need a sheet with foods that are o.k.. Right now, I eat a piece of toast and a can of unsweetened pears, and a little bit of milk. Maybe I'll lose some weight, but I know I'll get very weak before that happens. It's true, I watch people going for walks, working on their houses (redocorating), etc. and I feel like an alien from another planet. It's more than frustrating. I just took 2 anti-anxiety meds to help me not get so upset. A neigbor offered to walk my dog with his. I told him he was a Godsend because I can't do much activity and my dog is 18 mo. (still very active). He and his dog are walking my dog right now. I felt like he was an angel in a jogging suit. So nice. If you are taking Elmiron, have no noticed headaches, nausea,diarhrea (sp?) {used to be a good speller!** and backpain (backpain has worsened). The doc is so convinced it will work, but not right away,months. I've even read it can make your hair fall out. I don't want to go through that again. The 1st med I took for my mild epilepsy made my hair fall out every day. I changed to a different med and the only side effect is a consitently low white blood cell count (I guess that's what makes me so tired). I am determined not to give up, though. The doc still has not called about the pain clinic appt. yet. I only have 1 more. I guess I'll have to knock myself out with some phernergan this evening, so I will just have nightmares instead of being awake all night. Oh, get this..not that I really have desire to have 'relations' (too painful), but my Uro gave me suppositories called B and O's (Belladonna and Opium) so that I could try sex again (It's been over 3 months). They didn't work. A lady online here said the mg were too low. 10 mg...it doesn't work unless they are 30 mg or more. I don't go to that Uro anymore. I think all these ladies (and men) would be better dr.s than some of these liscensed people!

Feel Better Prayer for you,

Dani

[Claredale]

I am reading my same story on this thread. I feel absolutely so lazy!!! My house needs a good cleaning. Every Saturday, I have great intentions, then after a few chores, I am worn out and nap most of the day. I have had IC for well over 15 years, but the last couple of summers I have done very little yard work. My husband mows and edges and I have trimed the shrubs a couple of times, but I have not planted any flowers or anything. Yard work used to be my stress relief. There were times when I got home from a stressful day at work and immediately be pulling weeds from my flower beds before I even changed clothes. I also loved to iron. I still keep up with that most of the time since I can sit in the den with my heating pad. I am so glad to see that there are other people just like me. I keep telling myself to get my house clean and then hire someone to come in every couple of weeks to do maintenance cleaning for me. My son's future in-laws were coming into town a few weekends ago. All week long I was trying to get a few things done each day. When Friday came up I was in a panic. My son called and said that they weren't going to be able to come because of a friend that was put in the hospital. I actually started celebrating!!! (not to them!). I was in a mild flare and wasn't in the mood to socialize either. That's the other problem with having IC, everyone that I talk to with IC have just lost their will to go out and have fun. I am happy when I can be at home and under my heating pad. My poor husband is being so patient with me, but he knows how much effort it is for me to get out. If we are going to do anything like go out to eat (I very seldom cook anymore) we have to go as soon as we get off work, or I know that I will be at home in my PJs! After I work all week, weekends are my catch up time. I am using the B &O supp. They are 16.2 mg & 30 mg. I don't see any difference yet. I am still using the same amount of pain meds. I am trying to get off the oral meds.

Hugs and understanding!!!

[Moonheart]

My house is a pit. It drives me nuts. I was going to hire someone and then the politician I was doing webwork for and advertising stiffed me to the tune of $2500. So no clean house for me! ;)

I can so relate to the loss of joy and will to enjoy life. Last year I got my dream job. Working with Olympic class Dressage horses! I would have cried and done anything for a job like that years ago. I ended up quitting because I had to reach up to bridle and saddle the horses (still a dream) and I was bent over double in about an hour. I stuck it out the first day but was so miserable I ended up quitting.

That was like dying for me. I never, ever thought I'd say no to a job like that.

[Claredale]

I am so sorry!!! That would be a dream job for me as well. I did have to quit a great paying job due to my IC. Loved my boss, loved the people I worked with, I just couldn't handle being depended on everyday. The job I work now is slow paced most of the time. It does zap the little energy I have, but if I don't work, I would be more depressed, plus my boys are both in college. My boss has told me that I can go to hourly if I want and just work when I can, but I am going day to day right now to see if I can get myself stable from having to change doctors.

Prayers and hugs to all of us!!!!

[MakinIT]

Oh, I so understand the pit in the house. More than anything, smells bother me. We take care of my husbands father and he hasn't bathed in 3 count em, 3 years. He got up today and had skin shed all over his clothing. He's been in chronic pain himself but spends his days under the blankets in the front room. He smells ssoooo bad. He vomits, gets diarhea, poops himself...and he is only 65. Rog offered to help him bath, to hire a nurse...meanwhile Roger comes home and flips at me about the smell. I do everything to keep things clean and smelling ok, my husband is a pig..he flings his own smelly socks and unders whereever he takes them off. Then he wonders WHY do the girls make such amess. I do not want to spend what little energy I have being the familiy maid/slave. Because if the house does not look perfect it puts him in in a ****ty mood. And the maid thing was tried. didn't work. They didn't do a good enough job. I'm supposed to keep my home as clean as his mom does hers...Beautiful house on Peugot Sound. I am trying to keep a 1300 sq/ft home clean with 5 people and no one else helping.

And yes...I think the whole drug thing stinks. Thought my dad was way over that but he threw some rude conversation my way re: drug use. I told him to take a hike. was tired of explaining myself.

[**Angie**]

Just wanted to let ya all know my hse is a pit too!! I try to hide my piles behind sofas and my upstairs hallway. I have a huge pile in my bathrm that's been there for about 4 mos. I hate it. I hate having a messy hse. I just don't have the energy to do anything about it. I also clean hses and offices everyweek so it's real real hard to do anything with my own. My family are a bunch of pigs too. They walk and drop. It takes me having a nervous breakdown to get anybody to pick-up after themselves. I know if I could just get my hse clean I would feel less stressed. Well I'm having a hse full on Halloween so at least the downstrs will be clean. :)

[Claredale]

People coming over is always my motivator! I finally went to the grocery store tonight. The only reason that I forced myself out was because my cat was almost of out catfood. He only eats Meow Mix and he wants it now!!!!

[tabasco32]

I use to have just frequency and urgency. Only been having ic for 6 months.
Now I have daily pain. 1. with ic 2. with chronic constipation. hemrroids bleed. bladder hurts. need to strain to poo. don't know what to do anymore. I wait for the longest time to go to sleep at night so I get up later in the day and only stay awake for like 10 hours a day. I feel the shorter the day the better. Sad but true. taking milk of magnesium for constipation only thing that helps. Hope this isn't making my bladder issue worse. I feel this disease is like a double edged sword for me..!!!!!!!!!!I"M SO MAD I WANT TO SCREAM!!!!!!!!!!!

[**Angie**]

I'll scream with you. Maybe if we're all loud enough something will be done to find a cure "and" shut us up. :smile tee

[Freckles]

I feel your pain tabasco. I think we all do. It is so hard to be in pain all the time.

And to the others, my house is a pit as well. I've been living without bedroom furniture and living room furniture for about a year. Our little dog suddenly lost control of his bladder (very old ) and he peed all through my house and on my new furniture. I could not get the odor out and ended up tearing all the carpet up and giving the furniture to my soon to be x-husband. I'm divorcing and now unemployed and living on $350 a week so I don't know when I'll be able to get new furniture and carpet. It's tough living on concrete. Things are definitely not good right now.

Karen

[luvshrn]

My house is a pit also. I have the same problem, I live with the four little pigs! My bladder hurts most of the time and when it doesn't I feel impending doom because I know It is going to start hurting again. I am currently working two jobs and I feel lucky that I am able to do that (one of them is an overnight job) but I am always tired, always cranky, and I have to act like a tyrant to get my kids to help with any of the housework. My husbands mother is also a clean freak so he expects me to be like that too. VERY frustrating!!!!!!!!!!!!!!!:cussing:

[Freckles]

Don't feel bad about being cranky luvshrn. I think that is also a symptom of IC. I was at a support meeting here in Tampa where an x golf pro (can't remember her name) spoke. She was so amazing. She brought up the fact that she couldn't believe her husband made it through all the pain etc, that she was in because she was so hateful and cranky all the time. I raised my hand later and told her thankyou for mentioning that because I was the same and always felt very guilty for being so cranky. We have to realize that it's a side effect of pain. It goes hand in hand and we have to stop beating ourselves up about it..... if you hurt someone apologize and move on. It was so good to hear that.
Karen

[Claredale]

My husband is so supportive too. I can get so hateful at nothing. It's frustrating just listening to myself, so I can't believe that my husband stands me sometimes.

[DaniBelle]

Does anyone use Lyrica for nerve pain? I just picked up a script at the pharmacy and am hoping it will work for me. If it's anything like the Amitryptiline (sp?) I will be very disappointed. That stuff made me eat everything sweet in site for 3 days. I told me doctor it was an 'evil' drug! I have been in pain, IC and muscular for days. Last night was so bad I really thought I might have cancer. My doctor can't explain why my body aches are so bad except that I may have FM or RA. I wish they'd hurry up and let me know!

Dani

[Claredale]

Oh the love Amitryptine is the same with me. I would get up and get a handfull of cereal in the middle of the night. It drove me crazy wanting sweets. The only nerve meds I have been on was Neurontin. Now I am scared to take any nerve meds.

[Freckles]

Hi Dani,
I was on Lyrica for a very short while. I was on neurontin first and the pain doctor changed me to lyrica. She said the lyrica had been shown to be more effective on the burning kind of pain that I have. I did not renew the prescription because it does not have a generic and I had such a high co-pay. While I was on it for the month I did not notice any difference from the neurontin. Neurontin and Lyrica are very similar drugs. I can say this the neurontin helped me a lot. I really did notice a difference. It made me feel very strange, kind of light headed for a while, but I'm used to it now. I didn't know elavil made you eat sweets. That explains a lot for me. I'm trying to wean my self off of it, but if I don't take it I can't sleep. Now that I know that's why I'm eating so many sweets I think I'll try harder to get off of it. I would say to you definitely try the lyrica, because I think it will help you, but it does make you feel weird at first but you will get used to it. I know what you mean about feeling like you have cancer. That has always been my greatest fear. I just can't imagine that something that isn't cancer can cause this much pain.
Hang in there.
Karen

[bcarroll]

yes i am in pain everyday, i am on about 4500mg of hydrocodone and it does not work. it is only making my ulcers in my stomach worse. do you have any suggestions to what i need to do?

[Babs RN]

Yikes, I am not a doctor and am not commenting or making a medical decision for you in anyway, but 4500mg of hydrocodone is sooooooooooo high. Considering as well that hydrocodone is usually in combination with tylenol sounds kinda scary for your entire body, especially your liver. Did your doc write the script that way? If you are taking that much all the time, I am not surprised that you are tolerant.(Once again, I am not on a soap box talking from on high but if this is what your are taking and it is not working you need to find somethng that does) According to my calculations, to receive that amount of hydrocodone in a day based on the mg in the different strengths:

19 tabs which also contain 9500mg of Tylenol(that is double the max dose of for an adult of 4000mg per day)

I am sorry you are feeling so rotten and hope someone is able to help you very soon. I would just hate to see these meds ruin your body that is all ready suffering with the IC. Of course, you need to check with your docs first.

Hugs,
Barb:smile tee

[Pain]

i am on about 4500mg of hydrocodone

That number you quoted is the TYLENOL portion of the medication you are taking. First off you should be taking one that has the lowest relative amount of TYLENOL (Norco for example) OR get "pure" hydrocodone compounded at a local pharmacy and avoid the Tylenol all together. You are likely taking either 6 tablets with 750 Tylenol each or 9 with 500 each. FYI this is NOT the "primary" pain medication in the pills..the hydrocodone is and is likely either 5mg or 10mg. Norco makes 10/325 but overall you should be taken OFF a short acting Tylenol mixed medication if you have 24/7 severe constant pain.

Please speak to your doctor about changing medications to reduce or eliminate the amount of Tylenol you are taking each day as long term use of that high level of Tylenol can cause liver damage among other things.

If you have 24/7 severe pain as I do you need to be on a LONG ACTING pain medication that does NOT have Tylenol.

[Claredale]

I take 10/500 Lortab about 4 to 6 times a day. My doctor stressed the importance of me not taking Tylenol and being very careful with any meds with Tylenol in it. I have my liver tested about twice a year due to the meds that I am on. Please contact your doctor to verify what you should be taking!

Happy New Year!

Tracey

[MakinIT]

Wow...I take MS Contin for my constant pain relief ( 120mgs 2x day) and used to take percocet 10/650 for breakthrough pain and I had realized I had nasty level of acetominophem in my body b/c I had to take peroct every day (almost) at 4 pm. I switched to Oxycode.

[DaniBelle]

Which is the best breakthrough pain med. to take when Lortab 7.5/500 only lasts about 2 hours, then the pain is back even though I'm taking Avinza? What is the highest dosage of something with Ibuprofen in it (like Vicoprofen)? Need to know for appt. with pain dr. next week. Dr. took me off breakthrough med. and increased the Avinza to 90 mg. which has caused respiratory problems, nausea, and drowsiness. Dr. changed me back to Avinza 60 mg. today, but would not add a breakthrough med.. I am trying to mentally prepare myself for the pain (which is already creeping back and actually never went away completely on the 90 mg). I feel like I'm having menstrual cramps and my legs are hurting alot like when I used to have female organs! Feel sick...gotta lay down...laptop comp. not working today!

I'll check back later.

[Claredale]

They also have 10 mg Lortab. I have those when I feel like I am taking the 7.5 like I am eating them like M&Ms. I understand about the every 2 hours, especially at night. My doctor also started me on Lyrica since that sometimes works for nerve pain.

[bcarroll]

i stopped taking anatriptiline, it made me gain so much weight. i went back to the dr today and he put me on sonoma for muscle spasims. he is not sure if the ic is causing the spasims or the spasims are causing all the pain. i spoke to him about taking so much hydrocodone and he didn't seem concerned.:loco: so now i do not know what to do.

[Claredale]

yes i am in pain everyday, i am on about 4500mg of hydrocodone and it does not work. it is only making my ulcers in my stomach worse. do you have any suggestions to what i need to do?

Can you please tell me what the mg 7.5 or 10 and how many times you are taking it? I was talking to my dr and I told him about your posting. He said that that was very high and that a person's liver would not be able to handle that for very long. I haven't heard of Sonoma, so I don't know what that treats.
Are you taking Soma or Sonoma cause Soma is a muscle relaxer. I have taken that several times with good results.

[DaniBelle]

The post which said a person was taking 4500 Lortab was incorrect. The only dosages Lortab is prescribed in are the following: 2.5/200, 5/500, 7.5/500 and 10/650. The acetaminophen or ibuprofen (second set of numbers to the right of the slash) can be switched around according to what the dr. wants the patient to have, but as far as my knowledge, there are only 5 or 6 combinations of this medication. Like the other post said...4500 would kill you!

[Claredale]

Yes, I understand about the 2nd numbers, but I am wondering if she is taking that many pills. She would have to be taking 9 pills a day if she was taking the 7.5/500. I am really worried about her. Sorry bcarroll, I really am concerned about you!

[DaniBelle]

Sorry, I guess I was thinking of her perhaps misreading the script instead of her telling us she is combining the total amount per day. That amount would be so dangerous! She definitely needs to call her doctor and get her meds straightened out. Not too long ago there was a report about a girl who died from an overdose of Tylenol. She had a severe stomach bug and didn't realize that even though she kept throwing up the contents of her stomach, the tylenol had already gotten into her system each time. She o.d at 17...Very sad!

[Claredale]

Yes, there has been alot of media attention about overdosing of Tylenol.

[barbour1]

I have chronic pain everyday to .But lately i feel fulness and bloating.I moved to va and have a new Doc. i gained three pounds she had a fit so now i don't even want to go to the Dr. and get weighed i would rather blow her off.I have a lot of pintching feeling some times.And about the pain meds they can cause constipation and that's another whole problem.Any how i have been on narcotics for years but she wants me to ge to a pain clinic.Have any of you gone to a pain clinic? Seems like i went years ago and it was more relaxaztion stuff like listening to birds twirp on a tape or the ocean .So have pain clinics changed?And i have gained i feel about 20lb sence last year. it's bad enough having ic but if i get any more of a belly i will not have any self esteem..I use to be thin then heavy then got down to 140 and headed back up..I need help.Atkins diet helps but it's hard to start remembering to quit eating carbs.When i guit eating carbs i felt better,is there a food conection there?pLUS I'M A DIABETIC.LIKE AN ALLERGY TO WHEAT ?

[bcarroll]

7.5 hydrocodone and 7.5 tylenol. yes it is soma 350mg. i spoke with my pharmisist last night and she said i needed to slow down. so today i have only taven 1 hydrocodone and believe me, i am in some serious pain. the soma doesn't seem to relax me much, maybe i am too tense.

[bcarroll]

i went to the dr. yesterday and i have gained 15 lbs since july of last year. does ic cause you to swell and put on weight. i do not know anything about this disease.

[rachann]

Thank you for bringing that up. I have been on a high dose of Elavil for 4 years now and have gained 30lbs. My sugar cravings are terrible!I only found out recently that Elavil causes weight gain by slowing metabolism. All of my doctor's failed to mention this tiny bit of information.:rant: :tsk: For years I just thought that all this weight gain was strictly my fault. I know I definatly take much of the blame with my poor eating habits but it would have been nice to know that Elavil plays a role. I am extremely lucky. My husband still finds me attractive 30lbs heavier.:woohoo: My self esteem has gone down the :toilet:

[Claredale]

Bcarroll, I know that the pain is very difficult to deal with. Ask your doctor about a longer acting pain med. I have also started on Lyrica. There are alot of postings about it. The med is actually an anticonvulsant, but it supposed to help with nerve pain. So far, I have had good luck with it.

About the Elavil, I read on the side effects about the increase of weight and it was definitely right. I have gained about 30 pounds myself. I am no longer taking it, but I am still on other meds that cause weigh gain, so I can't win. My hubby is very kind and still loves me, but knows that I want to get back into my clothes. I worked hard several years ago to lose about 50 pounds. I got down to 105 and a size 2. I know I won't get that small again. I wear about a 10 now and my boobs are big (not that ooh la la big! LOL), so I am having a hard time fitting into my bras and shirts. My son is getting married in May so I would like to slim down to about a 6 and get these flabby arms under control!

[bcarroll]

i have asked him and he said that hydrocodone is the only thing he can give that will not cause more problems. He thinks that other meds causes the pain more. I went to another dr. in Memphis, and he put me on muscle relaxers, which of course they haven't worked yet, but i am hopeing it will soon. Do you have a hard time getting up in the morning? is this part of the disease. What is going to happen if i keep getting more tired?

[bcarroll]

my dr. said that anything with ibroprophen causes more pain to stay away from it.

[MakinIT]

Lordy...grogginess is my common friend...holy poo poo. I can't even get through a day without sleeping a couple times a day...But I have taken valium, 15 mgs a day for 4 years...When I don't take them, I am in massive spasms in my bladder. But, I've been able to cut back a lttle by taking pyridium. (with me it seems when my bladder/urethra get irritated, I start to spasm like crazy)

I have not spent a day napless in 4 years. Pretty sad isn't it?

[bcarroll]

i try to work a full time job, and there are days that i can not even concentrate, either i am so tired i can't think or i am in so much pain i can think. so where do we go from here?

[Moonheart]

i try to work a full time job, and there are days that i can not even concentrate, either i am so tired i can't think or i am in so much pain i can think. so where do we go from here?
I don't understand why he can't put you on MS Contin or something like that.

Also, I'm still confused as to how many pills of hydrocodone you were taking?

Help!:help: :loco:

[jorkale]

I trucked to iowa city to the vulvadinia clinic - dr. colleen kennedy...hi! i'm alive!!! hahahaha...well, the bv was gone...as i suspected since i finished 12.5 days of meds....but the pain was still there. seems i have pain every day..it's making me crazy.. she wants to see me when and if the bv comes back so she can see it for herself. i thought she was super cool. very considerate and ultimately concerned. she had me try lyrica and hodroxyzine..and you know for the first time in a long time, last night i forgot about pain several times. and to top it off, it was the first time in probably a year that i slept through the night. wow! so here i am at 9:30 am, hungry eating applesauce and granola with a cup of weak coffee. i hope this combination works. it would be great. one thing she is concerned about is that i have hole from my bladder into my vaginal wall, a fistula. or even from my bowel. i am trying the meds first. then if i don't see a lot of change we are going to do some tests for the other things. she also wants me to be in the pain clinic. she thought the best i would get is maybe 20% better. that was disappointing..perhaps she said i would only have 20% pain if this worked. i can't remember. in either case..i slept and that is a really big deal.
i am desperate to get rid of the daily pain. i work...i'm the director of drug testing for heaven's sake!!! it does take my mind of off my discomfort which is really really good. i'm just so sick of it. it's frustrating. well, this is a fresh start for me and i'm going to give it a shot. last night was interesting. we'll see how it goes. this message board has helped me tremendously just because i know i am not alone.
shelley

[MakinIT]

MS contin is pretty sedating as well. It is my main drug for pain relief and I take it twice a day for pain...have for 4 years except when I tried to switch to some other less sedating meds, I am taking 120 mgs 2 times a day though so maybe you wouldn't need to take as high a dose. I know if can go w/o the topamax for nerve pain it helps keep me from being so sleepy. But I do take Valium and Oxycodone for breakthrough pain. (actually Valium is scribed for every day for me but I really try to avoid it.)

Anyway...these drugs make all of us sleepy...how do any of you who work manage to drive to work and home, and to stay awake...I can't do it.

Tracey

[DaniBelle]

I hate feeling like a zombie, but I also hate being in pain 24/7. I do agree with my dr. that I needed to come down to the 60 from the 90 because of the breathing problems, etc.. There are two major things that bother me 1) He knew I had chronically low blood pressure (the pharmaceutical info says "Do not take this medication if you have this condition". He was supposed to address this, and didn't. I had no idea until I began having problems and read the info about the medication strength. I may have said this in a previous post, but when I spoke to my pain dr., he said I needed to forget about adding the breakthrough med. for now because it could cause problems even with the lower dose. I took this combination before and I never had a problem and was only changed because the pain was not completely taken care of. Now, I wish I'd just lived with it and never said anything. My dr. won't change anything (or even add a low dose of Lortab) until I have a full work-up with a Pulmonologist. I called yesterday and the earliest I can see one is in 3 weeks. What am I supposed to do about the pain until then. I've considered (many times in the last 2 days), just going to the ER and screaming that I have a very insensitive dr.. True, it's better that I am alive and BREATHING even in pain, but this never had to be in the first place. NOT MY FAULT. Now I'm stuck. I am aching and cramping right now and feel like jumping off the back deck! (Not to kill myself, but to get myself to the ER!) I can't believe how well...I'll say it....stupid some of the doctor's in my past have been. My last Gyn caused me to have 3 unnecessary surgeries when I only needed one. He just missed the problem when he was operating on me 3 TIMES! Oh well, I just took 4 ibupfrofen, 1 klonopin, and am going to take a Soma soon so time will pass faster and I can perhaps get a better dr. on Monday! I hope you have a good weekend. I wish you a pain-free, happy, stress-free evening!

[DaniBelle]

Yes, any kind of pain med, muscle relaxer (the stronger, the 'worser') will give you problems upon trying to be 'bright-eyed and bushy-tailed' in the morning. My main problem is that I am a little groggy, but the muscle pain I have from the FM makes me feel lke I've been run over by a truck while sleeping. It takes me a while to get out of bed. As you were saying, I believe the Lortab, Percocet, etc. (although they have a tendency to build up a tolerance in your body - happens quickly with me), do work better for the pain. When I take a Lortab, etc., within 20 minutes, it's like a heat-seeking missile goes right for the pain and knocks it out. My pain dr. doesn't like Lortab, etc. and if he does prescribe them, it's only with a longer acting med such as Avinza, etc.. I will call her next week and ask if I could try to just stay on the Lortab or Percocet. I think, also, if your script has ibuprofen in it instead of tylenol, it's much easier on your organs. I also think it lasts longer. I had dental surgery 2 months ago and the Vicoprofen the endodontist gave me worked better for all my pain (dental, bladder, and body) than the other stronger medication! I think everyone's different and the pain dr. has to find the right combination for each. I wish they would understand that. Right now, my Avinza has worn off (took at 1:00 p.m., it's now almost 8:00 p.m. and the 4 Ibuprofen aren't working....what do I do...I lay here on a heating pad and count the minutes until Monday when the Pain Center opens. Tha'ts no way to live. I'm tired of my husband and children seeing me groan and hunched over. It's not fair that there are not enough competent dr's out there to help us...we don't want this...they wouldn't last 1 day like this without running to the ER!


P.S. A tip to help with the trouble waking up well in the morning. Go straight to the shower and no matter how painful it is...stand there and let the moist heat help you. It improves me by 50% for a few hours.

I wish you the best!











i have asked him and he said that hydrocodone is the only thing he can give that will not cause more problems. He thinks that other meds causes the pain more. I went to another dr. in Memphis, and he put me on muscle relaxers, which of course they haven't worked yet, but i am hopeing it will soon. Do you have a hard time getting up in the morning? is this part of the disease. What is going to happen if i keep getting more tired?

[MakinIT]

I can relate to the showers but man, I just want to get up with my thick blanket and curl on the couch with my coffe (mild of course) and stare blankly at the wall...although I always doze off every morning.
as far as the ibuprofen stuff, wierdly enough...today my oldest daughter had to go to a rehersal for her musical she's in...(she's a support role in South Pacific) She dances like me...kllutzty...so these are important...well she was grumpy heading out the dooor and turned to yap at me and stepped wrong off the porch. She twisted her ankle pretty well. Needless to say, we had to go by her school, get her excused from practice as she bawled, fearing being kicked out of the program...then I went to Safeway to get stuff to help with her ankle. She has GERD, an Endoscopy showed blisters in her esophogus and I was worried about what to give her. The pharmacist said tylenol does no good for muscle pains. But the Naproxen and Ibuprofren are both hard on people with tummy and organ problems (especially the GERD, ulcer type stuff) but said Naproxen was the best because she only has to take it twice a day. It is also less harsh, although harsh enough to be a concern. (she takes alot of Ibuprofen during her period...I didn't realize how much and we had to put a kebash on it...she is 17 but still young) Her GI specialist said Ibuprofen was the worst of them to take, but she rolls her eyes...I did put her on Naproxen today and she seemed to like it though. (I told her it was a blue Ibu...later I told it was Naproxen)

Anyway...I'm just saying that because I went off percocet because I worried about the Tylenol in it and the doc took me off, and said he wanted me on a pure break through since it was long term and none of the OTC pain relievers they are cut with are good for you. I now take Oxycodone which, I don't know where it stacks in terms of the pyramid of pain pills for breakthrough...(I take MS Contin for regular pain relief)..

Ug...I hope my daughter's ankle is better in about a week. Her musical is in 3 weeks.

Tracey

[bcarroll]

i have really slowed myself down, i was up to taking around 6-7 7.5 a day

[MakinIT]

Wow...I'm sorry but did you say you have a med for continuous pain...that is..you take daily? (like I take MS contin 120mgs 2x daily and the Oxycodone 5 mgs for breakthrough) Or is that your only pain relief? I'm prob rehashing something...sorry...regardless, your doc needs to know your pain is that bad.

[Claredale]

i have asked him and he said that hydrocodone is the only thing he can give that will not cause more problems. He thinks that other meds causes the pain more. I went to another dr. in Memphis, and he put me on muscle relaxers, which of course they haven't worked yet, but i am hopeing it will soon. Do you have a hard time getting up in the morning? is this part of the disease. What is going to happen if i keep getting more tired?



I didn't realize that you were in the Memphis area. What doctor are you going to? Yes, most muscle relaxers make you groggy in the morning. Do you sleep okay otherwise? I probably get about 4 good hours of sleep, of course this is with the waking up to go potty, but during those 4 hours, I go right back to sleep. I have been on Soma several times and can't really tell that there was a difference, but I think it helped me with my sleep.

Tracey

[MakinIT]

Thanks for the quote Tracey83...I was in a hurry last night. bcarroll: my response is much like Tracey83 (I'm a Tracey as well so I have to keep stuff straight for my own sanity) It's wierd. When I wasn't ill with this, I was a very light sleeper (uh, after I had babies of course..prior to, I was a rock) Then, the meds made it impossible to wake up. I would literally dream I was peeing and I couldn't go. It hurt so bad I would sweat through the sheets and roger would have to wake me 2-3 times. (needless to say, we bought a couple more sets of sheets) . That was on MS contin, Valium at night, on antihistimes, sometimes breakthrough meds AND (here's the clincher...Topamax...nice drug for Epilepsy but also for nerve pain...AND makes you sleepy.) He would actually have to direct me into the bathroom. I finally went off the antihistimes and lowered the Topamax dose. I try not to use the other stuff except the morpine derivied stuff. I am so sleepy right now. mid afternoon I get very groggy. My pain has gone back up since going off the antihistimines. But I don't want to go back...

[Claredale]

I am not sensitive to medicines at all. After I have been taking them for awhile, it is almost like I am not taking anything. Lortab is the only thing that works for the pain, so when I am on anything else especially sleep meds, I have to take breaks so that the effectness comes back. I am on a new sleep med (you know the one with Abe Lincoln and the groundhog?). It is working okay, but I am still only getting about 4-5 hours. I wake up about 5:00 with the worst burning pain.

Better go for now.

Bye, Tracey

[MakinIT]

I am not sensitive to medicines at all. After I have been taking them for awhile, it is almost like I am not taking anything. Lortab is the only thing that works for the pain, so when I am on anything else especially sleep meds, I have to take breaks so that the effectness comes back. I am on a new sleep med (you know the one with Abe Lincoln and the groundhog?). It is working okay, but I am still only getting about 4-5 hours. I wake up about 5:00 with the worst burning pain.

Better go for now.

Bye, Tracey
Huh? Abe Lincoln?

[Babs RN]

It is called Rozerem.

Hugs,
Barb:)

[MakinIT]

Ahhhh...that's as clear as....my head in the morning...ha, ha, ha...now I'm curious...I'll have to look it up. I almost entered into goggle Abe Lincoln +groundhog +drug just to see what the heck came up. Some Goggle response are so much more entertaining than others...

[nyyankees20251]

Hello all,

I have pain all day to. I wake up with and every night as I try to fall asleep I have it. It rules my life. I have been diagnosed with IC for ten years but it has been the last 3 years that things have gotten absolutely rotten. Most days I feel like I am rotting on the inside.

I take four ultram a day, many times more, even though than there are days I go without. For two weeks out of the month I take 2 oxycodone a day. I also do versicare and prymidium. I used to take aleve, but it caused to very SERIOUS ulcers in my stomach so I can only use tylenol which won't work for me at all.

I hope we are all at some point pain free from this disease.

goodluck

[jen74]

I have pain all the time. Following the diet does not help me at all, even though I have always been on the bland diet due to my stomach issues. I cant believe how many of you are on pain meds. That is great that your doctors actually prescribe them. I cant get anything for pain from my doctor.
Jen