pain, pain go away...

[Queensweater]

:help: me! I've been lying in bed everyday for two weeks now, got up for a few hours each on Saturday and Sunday but I'm worse now than I've been in a month! :yikes: I've been on Elmiron for a week, and of course it has't kicked in yet. I've been taking 600mg advil daily like my urogyne suggested because of the severe inflammation I have (he suggested to take 600 mg every 8 hours as needed as well). I'm allergic to codeine, so I can't take most pain killers anyway, and the urogyne said narcotics wouldn't work because of the inflammation. I haven't eaten anything I'm not supposed to, heating pads/ice don't work...I don't know what to do anymore. I'm going to have to leave my job, which I can't afford to do, and drop out of university, which I don't want to do since I'm supposed to graduate in April. My physiotherapist's machine broke last week, too, and she hasn't received her replacement yet (she should have it by the end of the week). I don't mean to be so negative, but I'm really at wit's end. I have tried everything I can think of over the past couple of years, and nothing seems to work. Any suggestions or words of encouragement would be appreciated!

Heather

[jaime15]

{{Heather****
It's kinda hard to be anything BUT negative when you're hurting.....The elmiron unfortunately takes awhile to kick in...as you've prolly already been informed....I hope you feel better soon and everything will work out for you....hugs...

[Jean12]

I'm sorry that you are feeling so poorly. I'll pray that something happens soon for you to begin to feel better.

Jean

[Myli]

I understand how you feel. My longest flare was only 10 days, but I began to wonder if I wanted to live life that way. Pain is pain, being the product of inflamation doesn't strike me as a reason not to use adequate pain relief. Sounds to me like your doctor needs to get creative and find a pain med that you aren't allergic to as a start. There are other inflamatories he could try as well. I am taking Bextra for the inflamation problem and I think it helps. I'm sure the medical professionals amongst us can give you some better suggests than I can.

I hope you start feeling better very soon! I will keep you in my thoughts.

/hugs
/comfort
Myli

[Queensweater]

Thank you for the support.
Myli, I have tried just about every pain reliever over the past 3 years and nothing works. The most effective are anti-inflammatories, especially advil, but even that does nothing on the really bad days. :headbang:

[vm]

I'm confused - did your uro tell you narcotics wouldn't help IC pain?

[ICLori]

I'm also really wondering why your uro would say that - doesn't seem right to me. Maybe he/she just doesn't want the hassle of prescribing narcotics. For me, Percocet does work, at least in the short term (long story), and it seems to me that your doc ought to either prescribe you meds for pain (whether narcotic or not) or send you to a pain management doctor who will. Docs at least in the U.S. are required by law to either treat pain, or to refer you to someone who will treat pain.

(((HUGS))) I know how much it hurts. Please hang in there a little while longer, don't give up - there are medicines that will help you be comfortable - you just have to find a better doc, one who doesn't give up so easily, IMO...

Blessings,
Lori

[ICNDonna]

I'm so sorry you're in such pain. I'm assuming you have been checked for infection, but will mention it anyway in case you haven't --- if you haven't, I suggest you ask to be tested. Some people find that a low dose antidepressant is very effective to help with pain --- antispasmodics can also be a huge help --- I also suggest you ask your doctor about trying one or both.

I also have a problem with nausea with codeine (or any other pain med) causing nausea, but my doctor solved that problem by ordering pain meds with no codeine and always ordering phenergan tablets to take with the pain med.

You need some relief. I urge you to call your doctor.

Sending warm hugs,
Donna

[Ginny]

I can not believe your doctor told you that. You need pain relief. You should not have to give up your job or school. Please try another doctor. This one has no clue.

Ginny

[mallenajolie]

Hi:

I agree with the others, there are lots of other pain meds that are not codeine related. Vicodin, oxycontin, fentyl (duragesic patch). Oxycontin does wonders for me. If your doc won't prescribe anything, ask for a referral to a pain clinic..Try a warm shower, that seems to always help me..It may seem strange, but lie down on your tummy, but that seems to help. It won't hurt like you think it will. It will help stretch those abdominal muscles, relax tight muscles (e.g. bladder).

[Queensweater]

Thank you all for your replies.
My doctor told me that most narcotics wouldn't work for MY pain, because most of it is caused by severe inflammation of my bladder. I do not have any frequency or burning like most of you do. Given my history with trying pain killer after pain killer and none of them working, he felt it best to avoid anything habit-forming. I'm not sure what it's like in other places, but here in Newfoundland there is a high incidence of people addicted to Oxy-Contin , and they have often been turning to crime to pay for their habit. I will try to contact him though about low-dose antidepressants (something I have not tried yet).
As for the suggestions that I find a new doctor, it's not that easy. Newfoundland has a population of just over half a million people, with half of them in the metro-St. John's area. He is the ONLY one who can help me.
In regards to the pain-coping strategies suggested, heat makes the pain worse, as does lying on my stomach. I have to lean back on a pillow in bed to be the most comfortable.
Thanks again for all your concern!

Heather

[tigger_gal]

(((((((Heather))))))))
I find vicodine a great help.. pretty sure that has codine in it tho.... I am sorry you are in so much pain.... I like to get in a hot tub and relax.. maybe lite a scented candle and escape reality for a few..... I also curl up on the sofa with my new confy heating pad.... you can try to put heat or ice in the preanal area it dose help... I also take flexral 10 mg up to 3 times a day, it helps my bladder, and urised....
feel beeter soon..
hugs
Brat

[tate-sparks]

Queensweater,
I really must echo most of the responses you have received about pain mgmt via pain meds. There are misconceptions about narcotic pain medications, and I feel you may be operating under some of those based on your comment about addiciton. Pain studies show people who are in chronic pain do not become addicted to pain meds. A pain clinic could help you, even if you have to travel to one it would not be frequently. I also am allergic to codeine along with a mydriad of other meds and have found narcotics very helpful. Many of my ic problems are pain and spasm related. Also high doses of anti-inflammatory can irritate the bladder. You may be increasing your pain. Please consider another uro, even if you must travel. Currently I drive 60 miles one way.
Sincerely,
tate-sparks

[KristaM]

I just wanted to add that I am from Newfoundland as well. I don't know how many of you are familiar with our province but travelling is very difficult. We are a very isolated island bobbing in the North Atlantic. Our choices for travel would be driving 8 hours across the island and then we would have to spend about 12 hours on a boat which would only get us as far as Nova Scotia or to fly and that is very expensive. Dr. Strand ( my doc as well ) is the only urogyno in the city and because Heather has endo and Ic it is the only doctor who can help her.. Finding another doctor is not an option for her..or me so we just have to deal with this guy as best we can and hope that he will do his best to help us.
Krista

[Miki]

Hard to make lemonade when you are so much in pain. I too am in a flare. None of my usual tricks are working. I think after all these years I have become used to the codine type based Narcs. I wear a duragesic patch every day. It has helped me so much, but then the past 3 months, I have had some severe flares. This flare I am in now is about 5 days long, or I should say, I have been in a flare for over a month with a few days of feeling ok!
I wish this was a week day. I will call my pain clinic tomorrow and see if they have any suggestions. I can not go on this way. I too am in bed all day, and night. I am not sure when I really slept a full night. I have gotten a couple of hours here and there, but not good deep sleep.

Here's a funny for you.
With this strange flare thingy, I wind up going to the pot, and start to pee.
But, I have spasms and then it feels as if I haven't finished. So, I wait till the feeling builds up again and do the next section of peeing. When this happens in the middle of the night, or about 5 am, I find that I fall asleep on the pot.
My daughter has gotten photos of me all crumpled over, my head almost on the floor.
There have been times I actually fell off the pot!!!
Then eventually, after an hour or two, the bladder feels empty enough that I don't need to pee and I go back to bed.
This recent flare is not at all like this, I am constantly in pain. Waiting to pee, cause I know I really don't need to pee.
I have tried everything I can that I have in my arsenal of pain relief. Things are just not working well.

The amount of meds I take would put a normal person out for days.
I just read through or type on computer. I can't fall asleep when I can't find a comfortable position in bed, sitting down, reclining. Heating pads, hot baths, all the normal things I do, nothing.
I hope my pain doc can give me something new. MY Rx of lortab will never last this month. I am going through the pills too fast. (2 7.5's every 6 hours. I tried dropping to one pill, or 1.5 and I am now sorry I did that.)

I do not know why your uro in Newfoundland thinks the only thing that will help are anti inflam. You need to try a different base of pain killers...stay away from the codine base stuff. (codine, oxcontin, lortab, vicodin. these are all codine based)
Good luck to you.

Miki

[Wimpers]

The thought of what you eat / drink can inflame----badly. :rolleyes: Believe it or not---drinking alot of water--not the coffee/sodas. It takes time to change your drinks/foods.
Foods are important too----asking your Dr. for a list is helpfull.
Daily Elmiron 3/day is helping :dizzy: dizzy is a side exect........
:woohoo: Good luck for all!

[Miki]

Food and stuff just are not triggers for me.
At least not from what I have seen.
I get flares at anytime, anywhere, and they are not related.

I will start to look at things more clearly.
I know constipation and colon attacks set off a short flare. (half a day)

I tried using the sugar in my drink concoction, and it didn't matter.
I went back to equal. It never bothered me before, and I have been doing this for over a year.
Through flares and not.
So, it can't be that.

Oh well. Stress??

[Myli]

For me, stress will inevitably cause a flare. I have had a flare follow a stressful event within minutes. I try very hard to head off a stress attack by minimizing my contact with whatever the cause of the stress is. I also try relaxing and deep breathing to release the muscle tension stress causes. If I am at home, I immediately get my ice bag out and start sitting on it and take some Uristat.

Stress is a killer.

:grouphug:
Myli

[RedLione]

Heather, I just read an article on immunesupport.com by Dr. Robert Bennett. He explains, "The use of opiates is often condemned out of ignorance regarding their propensity to cause addiction . . . While physical dependence is a withdrawal syndrome on abrupt discontinuation, addiction is a dysfunctional state occurring as a result of the unrestrained use of a drug for its mind-altering properties." He also says that chronic pain patients almost never become addicted. Boy, the media sure throws that term around loosely! Do Elizabeth Taylor and Rush Limbaugh take drugs for mind-altering purposes?? Who knows. BUT I KNOW WE DON'T! Your doc needs to treat you fairly and find SOMETHING you can take. Even a 20% reduction in pain would be wonderful for us. Stick with it. I hope you get relief soon. HUGS

[Miki]

RedLione,
I can't agree with you more.!
It is scary to be dependent on the drugs, but it is worse to know the pain I suffer when they don't work. (as happened in the past couple of months for flares.)
Pain clinic has given me different types to try now. We probably will need to do a rotation, just to make sure the drugs will stay effective.

Miki

[Queensweater]

I want to thank you all (again lol) for your suggestions. I've been off here for a couple of weeks now, and am just seeing the replies for the first time. :)
On Oct 15, I went to my GP (I was in there for 45 mins...not bad for a 10 min appt). Well, he read out the results of my cystoscopy, and confirmed I had IC (and endo). However, he said over the years he's seen several IC patients and NOT ONE even came close to the amount of pain I appeared to be in. In a sick kind of way, I liked that he said that: I felt validated in how I felt, especially since doctors I saw in Calgary before I moved told me it was in my head.
Anyway, GP asked about my diet and I told him I had the list of trigger foods, most of which I don't eat anyway. I also told him I have never gotten worse after a meal or snack. he told me to just pay attention and record if I got worse after eating. I also told him I'm taking Elmiron, but haven't noticed any difference yet. When I mentioned how I've been in bed for so long (4 weeks today) he gave me a form for a medical withdrawal from university, and said he would still see me because I had been registered this semester (campus doctors are not permitted to see non-students due to the high volume). In the meantime, he also put me on Amitriptyline, which is a mild anti-depressant also used for chronic pain (which seems to be helping a little bit). :woohoo: I go back to see him in 2 days.
I tried to return to office work at my job 2 days ago, and I didn't even make it an hour. So I guess I have to claim Unemployment now since I can't work. (I still can't sit or stand for more than 5 mins which means I can't really do ANYTHING). :headbang: On the plus side, my boss is keeping me on payroll until I'm able to return to work. :thumbsup:
On a sidetrack...since I can't work, I've been thinking of working from home. :idea: I looked at the suggestions on this site, but I'm not very crafty so me making things and selling them is not a good idea. I can't really get out around to buy stuff to sell on Ebay, so that's out. I've been toying with the idea of writing a novel, but that wouldn't bring in money for quite a while (if at all...) so any suggestions you have would be welcome!

Heather

[amber sevy]

i want to say hi to everyone. I read a lot that is on here but I don't say much. I used to find that I had time that I was not in pain now the past 6mo I have been in pain all the time. last week I had the bladder overdesention and cauterized and I have seen small inprovement but this is better then none. next week they want to start DMSO ( I think) has this helpped any one??
I know that you can live with IC I have found that it has just made my life a lot harder to get threw the day without pain pills all day long

[Myli]

:welcome: Glad you decided to post. I have DMSO instillations approximately every 30 days. I believe it does help. I wish I could point to one drug and say it is the one that made the difference, but as many are, I take several drugs. I think it takes them all to take care of the various symptoms. But none of my prescriptions offered immediate, oh my gosh, the pain is all gone solutions. Gradually, over time, the pain has diminished and I am pain free more of the time than the time I spend in actual pain.

I hope DMSO helps you!! Being on pain meds all the time is no fun either.

:grouphug:
Myli

[Babs RN]

How about Longaberger Baskets or Pampered Chef Parties They are alot of fun and challenging.


hugs,
Barb

[Queensweater]

:) Just wanted to report that for the last three days I have felt better than I have since Christmas! My doctor increased my Amitriptyline dose to 100mg and it is defintitely working! The smaller doses showed signs of improvement but nothing longer than a few hours! I'm going to wait a few days to know for sure, but I am thinking of returning to work next week (my boss kept me on payroll and said I could come back whenever I was able). :woohoo:

Hope everyone is having a good and painfree day!
Heather

[Myli]

Glad to hear you are feeling better!! Hope it continues!!

:grouphug:
Myli

[Iris]

Hi, glad to read your post, and you are feeling better, way to go, Iris. :)